TY - JOUR AU - Teodorowski, Piotr AU - McInnes, Melanie AU - Dale, Glen AU - Galbraith, Linda AU - Radin, Esme AU - Gold, Karen AU - Gadsby, Erica PY - 2025/7/28 TI - Public Involvement in Cancer Research: Collaborative Evaluation Using Photovoice JO - JMIR Cancer SP - e75741 VL - 11 KW - patient involvement KW - prostate cancer KW - breast cancer KW - PPI KW - patient and public involvement KW - patient engagement N2 - Background: A public involvement group consisting of 4 public contributors with lived experience of cancer diagnosis contributed to 2 cancer research projects that focused on optimizing the diagnostic pathways for patients with suspected cancer. The public contributors have been involved from the start of the projects and were involved in aspects of the design, analysis, and dissemination alongside research and clinical teams. Despite public involvement in cancer research being seen as a key element of the research process, there is still a limited understanding of what works well and how to do it in a meaningful way for both researchers and public contributors. Objective: This study aims to evaluate the public involvement process in 2 cancer research projects. Methods: This was a collaborative evaluation with the research team and public contributors jointly evaluating the process. Data were collected throughout the lifespan of the project by public contributors through photovoice, where they collected photos that represented their experiences of involvement. At the end of the evaluation meeting, 2 separate analyses were conducted. First, public contributors reflected on their experiences using a 4-dimensional framework to capture how strong their voice was, how many ways they had an opportunity to be involved, if their feedback was implemented, and if the discussion focused on their priorities. Second, they analyzed the collected photos by organizing them alongside their narratives, explaining their meanings and comparing how they experienced the involvement process. Results: Narratives from 8 photos illustrate public contributors? experience of involvement in these projects, presenting them in chronological order, showing how their perspectives evolved from not knowing what form the project would take, through understanding foundations and building confidence through being satisfied with the successful projects. Results from the 4-dimensional framework showed that public contributors felt that their voices were strong, and the research and clinical team mostly implemented suggested changes. The discussion focused on topics and issues that were relevant to public contributors. However, how public contributors were involved depended mainly on the research team?s decision, and they would have preferred more opportunities. Conclusions: This study has shown that public contributors can be meaningfully involved throughout the lifespan of cancer research projects. The evaluation demonstrated that establishing a strong relationship and trust between researchers and public contributors helps to ensure that the public contributors? voice is meaningful and makes a difference in the projects. However, it also identified improvements for future public involvement. Researchers should involve public contributors as early as the funding application stage to offer more opportunities to shape research and thus have diverse involvement opportunities at each stage of the research process. UR - https://cancer.jmir.org/2025/1/e75741 UR - http://dx.doi.org/10.2196/75741 ID - info:doi/10.2196/75741 ER - TY - JOUR AU - Glenning, Jeffry AU - Gualtieri, Lisa PY - 2025/7/28 TI - Patient Perspectives on Artificial Intelligence in Medical Imaging JO - J Particip Med SP - e67816 VL - 17 KW - artificial intelligence KW - medical imaging KW - patient-centered care KW - patient participation KW - health equity KW - medical ethics KW - digital health KW - participatory medicine UR - https://jopm.jmir.org/2025/1/e67816 UR - http://dx.doi.org/10.2196/67816 ID - info:doi/10.2196/67816 ER - TY - JOUR AU - Linke, D. Anita AU - Franklin-Ryan, Amanda AU - Horn, Angela AU - Beeler, E. Patrick AU - Hug, L. Balthasar PY - 2025/7/28 TI - Patient Portal Registrations at a Swiss Tertiary Referral Hospital Over the Course of the COVID-19 Pandemic: Retrospective Data Analysis JO - J Med Internet Res SP - e56961 VL - 27 KW - electronic patient portal KW - personal health record KW - MyChart KW - Epic system KW - COVID-19 pandemic KW - registration rate KW - registration pattern KW - age KW - gender N2 - Background: To enhance patient empowerment, the Cantonal Hospital of Lucerne launched a patient portal (MyChart) in December 2019, granting patients access to their medical records, diagnoses, and laboratory results. Months later, the first COVID-19 case was reported in Switzerland, with the pandemic dramatically affecting health care services. Objective: This analysis aims to investigate how the pattern of patient portal registrations evolved during the pandemic, with reference to the spread of COVID-19, as well as local and federal policies. Methods: This retrospective observational study analyzed the distribution of patient portal registrations after its introduction at the study site from December 1, 2019, until July 31, 2022. The descriptive analysis included the 7-day mean of registrations, plotted alongside the number of administered COVID-19 tests and COVID-19 vaccinations. This was analyzed concerning predefined time periods and stratified by age and gender. Additionally, an interrupted time series analysis was conducted for the different time periods. Results: A total of 126,519 patients registered on the patient portal during the study period, with a slightly higher proportion of female patients (n=66,118, 52.3%) and 11.3% (n=14,259) being 65 years of age or older. The daily registration rate differed substantially over the course of the COVID-19 pandemic, whereby four peaks with >200 registrations per day were identified. The first and third peaks coincide with high COVID-19 testing rates in autumn 2020 and 2021, whereas the second and fourth peaks coincide with the release of the vaccine in spring 2021 and the booster at the end of 2021. These patterns are also reflected in the interrupted time-series analysis: for every transition from one period to the next, the immediate effect of the intervention (level change) is statistically significant with P<.05. Regarding patient portal users aged 65 years or older, only two major peaks in registrations can be identified which coincide with the release of the COVID-19 vaccine and booster. Conclusions: The COVID-19 pandemic, with its disease dynamics, including testing and vaccinations, seems to have influenced the number of patient portal registrations. In addition, it appears that patients aged 65 years or older predominantly registered for COVID-19 vaccines. UR - https://www.jmir.org/2025/1/e56961 UR - http://dx.doi.org/10.2196/56961 ID - info:doi/10.2196/56961 ER - TY - JOUR AU - Agrawal, Lavlin AU - DaSouza, Oakley Richelle AU - Mulgund, Pavankumar AU - Chaudhary, Pankaj PY - 2025/7/28 TI - Frequency of Electronic Personal Health Record Use in US Older Adults: Cross-Sectional Study of a National Survey JO - JMIR Aging SP - e71460 VL - 8 KW - electronic personal health record KW - aging population KW - self-efficacy KW - technology adoption KW - health IT KW - patient engagement N2 - Background: Electronic personal health records (ePHRs) hold significant potential to improve health management for older adults by enhancing access to medical information and facilitating communication with health care providers. However, usage remains low among individuals aged 65 and older. While existing research has identified barriers such as low self-efficacy, limited digital literacy, and usability challenges, the specific factors influencing the use of ePHRs among older adults are not yet fully understood. Objective: This study integrates the Aging and Technology framework with the Patient Technology Acceptance Model to examine key predictors of ePHR use among older adults, including age, education, issue involvement, performance expectancy, effort expectancy, and self-efficacy, while controlling for demographic factors such as gender, race, and income. Methods: This study utilizes data from the Health Information National Trends Survey (HINTS 5 cycle 3), which includes 532 respondents representing 13,136,180 US adults aged 65 years and older, after applying survey weights. Structural equation modeling was used to analyze the factors influencing the frequency of ePHR access over the past 12 months. Results: The findings indicate that older adults with higher self-efficacy used ePHRs more frequently. Additionally, issue involvement, performance expectancy, and effort expectancy were positively associated with ePHR use. Notably, self-efficacy partially mediated the relationship between age and the frequency of ePHR use. Conclusions: These findings suggest that enhancing self-efficacy, improving usability, and increasing the perceived benefits of ePHRs are critical for boosting usage among older adults. The study underscores the need for targeted interventions to support older users, simplify digital interfaces, and provide accessible educational resources, ultimately contributing to better health outcomes and an improved quality of life for older adults. UR - https://aging.jmir.org/2025/1/e71460 UR - http://dx.doi.org/10.2196/71460 ID - info:doi/10.2196/71460 ER - TY - JOUR AU - Sheahen, Brodie AU - O'Hagan, T. Edel AU - Cho, Kenneth AU - Shaw, Tim AU - Lee, Astin AU - Lal, Sean AU - Sverdlov, L. Aaron AU - Chow, Clara PY - 2025/7/18 TI - Barriers and Enablers to Routine Clinical Implementation of Cardiac Implantable Electronic Device Remote Monitoring in Australia Among Cardiologists, Cardiac Physiologists, Nurses, and Patients: Interview Study JO - JMIR Cardio SP - e67758 VL - 9 KW - remote monitoring KW - cardiac implantable electronic devices KW - cardiac implant KW - patient engagement KW - barriers and enablers KW - cardiovascular disease KW - CVD KW - congestive heart failure KW - CHF KW - myocardial infarction KW - MI KW - unstable angina KW - angina KW - cardiac arrest KW - atherosclerosis KW - cardiology KW - cardiologist N2 - Background: Remote monitoring (RM) of cardiac implantable electronic devices (CIEDs) has demonstrated many patient and health care system benefits. Consequently, the use of RM technology for patients with CIEDs is the standard of care as highlighted by international guidelines. However, RM has not yet been integrated into universal, routine clinical practice. Objective: We aimed to establish key stakeholder perspectives on the barriers and enablers of CIED RM implementation and to apply the theoretical domain framework to highlight the most effective approaches to facilitate routine adoption of CIED RM. Methods: This was a qualitative study, using semistructured interviews to explore the barriers and enablers encountered when incorporating RM into CIED management. Participants included cardiologists, cardiac clinicians or physiologists, nurses, and patients. Interviews were transcribed verbatim and analyzed through inductive thematic analysis and deductive approaches using the NVivo (version 14; QRS International Pty Ltd) software. The theoretical domains framework was used to understand barriers and enablers. In the inductive phase, we did not assess trustworthiness, as our thematic analysis approach views data as interpretations rather than objective truths. In the deductive phase, we conferred to ensure consistency in theme alignment with existing frameworks. Results: Interviews were conducted among 35 participants (16 patients, 10 cardiologists, and 9 cardiac physiologists and nurses). We identified 5 main themes and their associated subthemes, with 1 representing an enabler and 4 representing barriers. They were: (1) patient benefits from RM, such as improved CIED and cardiovascular management, and improved patient-centered care; (2) insufficient allocation of CIED RM resources, which included insufficient RM clinic funding and staffing, insufficient RM service reimbursement, and RM infrastructure and access inequity; (3) suboptimal management of data, which includes inconsistent RM alert interpretation and management, lack of guidance for clinic staff on RM data management, and an increased alert burden for clinics; (4) insufficient patient education post-CIED implant, this was attributed to limited health care worker availability and resulted in inadequate patient CIED and RM knowledge postimplant and patient anxiety associated with RM; and (5) patient engagement with CIED management, which included the need for increased patient interaction with RM alerts and the ability to share data with patients. These subthemes were mapped to 6 specific domains of the theoretical domains framework: ?Beliefs About Capabilities,? ?Environmental Context and Resources,? ?Beliefs About Consequences,? ?Knowledge,? ?Emotions,? and ?Goals.? Conclusions: Patient engagement was identified in 3 of the 5 themes describing barriers and enablers to RM. These highlight the importance of addressing patient engagement with RM to better implement and integrate the use of RM into routine clinical practice. Barriers and enablers extend across multiple domains and suggest that a multipronged approach is required to translate the gold standard care of RM to routine clinical practice. UR - https://cardio.jmir.org/2025/1/e67758 UR - http://dx.doi.org/10.2196/67758 ID - info:doi/10.2196/67758 ER - TY - JOUR AU - Ouellet, Steven AU - Naye, Florian AU - Supper, Wilfried AU - Cachinho, Chloé AU - Gagnon, Marie-Pierre AU - LeBlanc, Annie AU - Laferrière, Marie-Claude AU - Décary, Simon AU - Sasseville, Maxime PY - 2025/7/18 TI - Digital Health Portals for Individuals Living With or Beyond Cancer: Patient-Driven Scoping Review JO - JMIR Cancer SP - e72862 VL - 11 KW - cancer KW - oncology KW - patient portal KW - electronic health records KW - online access KW - patient records KW - social determinants of health KW - scoping review KW - Preferred Reporting Items for Systematic Reviews and Meta-Analyses N2 - Background: Digital health portals are online platforms allowing individuals to access their personal information and communicate with health care providers. While digital health portals have been associated with improved health outcomes and more streamlined health care processes, their impact on individuals living with or beyond cancer remains underexplored. Objective: This scoping review aimed to (1) identify the portal functionalities reported in studies involving individuals living with or beyond cancer, as well as the outcomes assessed, and (2) explore the diversity of participant characteristics and potential factors associated with portal use. Methods: We conducted a scoping review in accordance with the JBI methodology (formerly the Joanna Briggs Institute) and the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines. We included primary research studies published between 2014 and 2024 that involved participants living with or beyond cancer, had access to personal health information, and assessed at least one outcome related to health or the health care system. We searched the Embase, Web of Science, MEDLINE (Ovid), and CINAHL Plus with Full Text databases. Five reviewers independently screened all titles, abstracts, and full texts in duplicate using Covidence. We extracted data on study design, participant characteristics, portal functionalities, outcomes assessed, and PROGRESS-Plus (place of residence; race, ethnicity, culture, or language; occupation; gender or sex; religion; education; socioeconomic status; and social capital?Plus) equity factors. Results: We included 44 studies; most were conducted in the United States (n=30, 68%) and used quantitative (n=23, 52%), mixed methods (n=11, 25%), or qualitative (n=10, 23%) designs. The most common portal features were access to test results (28/44, 64%) and secure messaging (30/44, 68%). Frequently reported services included appointment-related functions (19/44, 43%), educational resources (13/44, 30%), and prescription management features (11/44, 25%). Behavioral and technology-related outcomes were the most frequently assessed (37/44, 84%), followed by system-level (19/44, 43%), psychosocial (16/44, 36%), and clinical outcomes (5/44, 11%). Overall, 43% (19/44) of the studies addressed PROGRESS-Plus factors. Age was the most frequently reported (13/19, 68%), followed by socioeconomic status (10/19, 53%), race or ethnicity (7/19, 37%), and gender or sex (7/19, 37%). Social capital (2/19, 11%), occupation (1/19, 5%), and disability (1/19, 5%) were rarely considered, and religion was not reported in any study. Conclusions: While digital health portals enhance patient engagement, their clinical impact and equity implications remain insufficiently evaluated. We found disparities in functionalities, outcomes, and PROGRESS-Plus representation. To promote equitable benefits, future studies should adopt inclusive designs and evaluation strategies that address diverse outcomes and integrate social determinants of health. UR - https://cancer.jmir.org/2025/1/e72862 UR - http://dx.doi.org/10.2196/72862 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/72862 ER - TY - JOUR AU - Profka, Klea AU - Wang, Agnes AU - Schriver, Emily AU - Batugo, Ashley AU - Morgan, U. Anna AU - Mowery, Danielle AU - Bressman, Eric PY - 2025/7/18 TI - Patient Interaction Phenotypes With an Automated SMS Text Message?Based Program and Use of Acute Health Care Resources After Hospital Discharge: Observational Study JO - J Med Internet Res SP - e72875 VL - 27 KW - mHealth KW - behavioral phenotyping KW - clustering analysis KW - SMS text messaging KW - transitions of care KW - mobile health KW - mobile phone N2 - Background: Automated bidirectional SMS text messaging has emerged as a compelling strategy to facilitate communication between patients and the health system after hospital discharge. Understanding the unique ways in which patients interact with these messaging programs can inform future efforts to tailor their design to individual patient styles and needs. Objective: Our primary aim was to identify and characterize distinct patient interaction phenotypes with a postdischarge automated SMS text messaging program. Methods: This was a secondary analysis of data from a randomized controlled trial that tested a 30-day postdischarge automated SMS text messaging intervention. We analyzed SMS text messages and patterns of engagement among patients who received the intervention and responded to messages. We engineered features to describe patients? engagement with and conformity to the program and used a k-means clustering approach to learn distinct interaction phenotypes among program participant subgroups. We also looked at the association between these interaction phenotypes and (1) patient demographics and clinical characteristics and (2) hospital revisit outcomes. Results: A total of 1731 patients engaged with the intervention, among which 1060 (61.2%) were female; the mean age was 65 (SD 16.1) years; 782 (45.2%) and 828 (47.8%) patients identified as Black and White, respectively; and 970 (56%) and 317 (18.3%) patients were insured by Medicare and Medicaid, respectively. Using k-means clustering, we observed four distinct subgroups representing patient interaction phenotypes: (1) a high engagement, high conformity group (enthusiasts, n=1029); (2) a low engagement, high conformity group (minimalists, n=515); (3) a low engagement, low conformity group (nonadapters, n=170); and (4) a high engagement with an intense level of need group (high needs responders, n=17). Differences were observed in demographic characteristics?including gender, race, and insurance type?and clinical outcomes across groups. Conclusions: For health systems looking to leverage an SMS text messaging approach to engage patients after discharge, this work offers two main takeaways: (1) not all patients interact with SMS text messaging equally, and some may require either additional guidance or a different medium altogether; and (2) the way in which patients interact with this type of program (in addition to the information they communicate through the program) may have added predictive signal toward adverse outcomes. UR - https://www.jmir.org/2025/1/e72875 UR - http://dx.doi.org/10.2196/72875 ID - info:doi/10.2196/72875 ER - TY - JOUR AU - Khanbhai, Mustafa AU - Carenzo, Catalina AU - Aryasinghe, Sarindi AU - Manton, David AU - Mayer, Erik PY - 2025/7/10 TI - Leveraging AI to Drive Timely Improvements in Patient Experience Feedback: Algorithm Validation JO - JMIR Med Inform SP - e60900 VL - 13 KW - patient experience KW - quality improvement KW - free-text analysis KW - machine learning KW - artificial intelligence KW - patient feedback KW - friends and family test KW - natural language processing KW - algorithm KW - health informatics N2 - Background: Understanding and improving patient care is pivotal for health care providers. With increasing volumes of the Friends and Family Test (FFT) data in England, manual analysis of this patient feedback poses challenges for many health care organizations. This underscores the importance of automated text analysis, particularly in predicting sentiments and themes in real time. Objective: Leveraging machine learning and natural language processing, this study explores the utility of a supervised algorithm to systematically test and refine the algorithm?s cross-contextual performance in diverse health care settings, addressing variations in population characteristics, geographical locations, and care settings, ultimately driving improvements based on patient feedback. Methods: The text analytics algorithm initially developed in a large acute trust in London was further tested in 9 health care organizations with diverse care settings across England. These trusts varied in technical capacity and resource, population demographics, and FFT free text datasets. Testing and validation of the algorithm were performed, including manual coding of a subset of retrospective comments. Technical infrastructure, including coding environments and packages for algorithm testing and deployment, was optimized. The algorithm was iteratively trained using bag of words from anonymized data, tailored to accommodate contextual variations, and tested for change in algorithm performance while simultaneously rectifying issues identified. Results: The algorithm demonstrated satisfactory overall accuracy (>75%) in predicting themes and sentiments embedded within free-text responses across a variety of care settings and population demographics. While the algorithm yielded strong and reusable models in relatively stable environments, such as adult inpatient care settings, the initial accuracy was notably lower in organizations providing services such as pediatrics and mental health. However, the accuracy of our algorithm significantly improved when individual trust coding templates were applied. Thematic saturation was reached after the fifth organization was recruited, and no further coding was required for the last 4 organizations. Subsequently, a framework and pipeline for deployment of the algorithm were developed to provide a standardized approach for implementation and analysis of FFT free text, ensuring ease of use. Conclusions: This study represents a significant step forward in leveraging free-text FFT data for valuable insights in diverse health care settings through the testing and development of a robust supervised learning text analytics algorithm. The disparity in some care settings was anticipated, given that the lexicon and phraseology used was inherently different from those prevalent in adult inpatient care (where the algorithm was developed). However, these challenges were addressed with further coding and testing. This approach enhanced the accuracy and reliability of the algorithm, encouraged inter- and intraorganizational collaboration, and shared learning. UR - https://medinform.jmir.org/2025/1/e60900 UR - http://dx.doi.org/10.2196/60900 ID - info:doi/10.2196/60900 ER - TY - JOUR AU - Gingele, Joachim Arno AU - Steiner, Bianca AU - Zippel-Schultz, Bettina AU - Brunner-La Rocca, Hans-Peter PY - 2025/6/27 TI - Adherence to eHealth Interventions Among Patients With Heart Failure: Scoping Review JO - JMIR Mhealth Uhealth SP - e63409 VL - 13 KW - heart failure KW - eHealth KW - patient adherence KW - review KW - quantitative data KW - mixed model KW - wearables KW - invasive devices KW - telephone support N2 - Background: Heart failure (HF) is a significant global health challenge, requiring innovative management strategies like eHealth. However, the success of eHealth in managing HF heavily relies on patient adherence, an area currently not sufficiently investigated despite its critical role in ensuring the effectiveness of this approach. Objective: This review was initiated to gather evidence on adherence to eHealth devices among patients with HF. The goal was to survey the current state of adherence, pinpoint factors that promote successful engagement, and identify gaps needing further research. Methods: A scoping review was conducted to gather quantitative data on eHealth engagement from relevant clinical HF studies indexed in PubMed, CINAHL, and PsycINFO up to February 2025. Descriptive characteristics of the publications were extracted, and generalized mixed model analyses were used to identify eHealth characteristics affecting patient adherence. Results: Our analysis included 70 studies, primarily using noninvasive eHealth interventions with wearables (n=51), followed by wearables only (n=8), noninvasive eHealth interventions without wearables (n=6), invasive devices (n=3), and telephone support (n=2). The median number of patients per study was 49 (IQR 20?139), and the median follow-up duration was 180 (IQR 84?360) days. Variability in reporting and definitions of eHealth adherence was noted. In total, 20 studies assessed adherence trends, with 13 noting a decline, 6 observing no change, and 1 reporting an increase over time. Factors influencing adherence were explored in 29 studies; 7 indicated higher adherence with increasing patient age, 2 showed a negative correlation, and 9 detected no age-related differences. No gender differences were found in the 10 publications that reported on gender, and 9 studies found no association between adherence and the New York Heart Association classification, while 1 noted higher adherence in patients with more severe symptoms. In 35 (50%) studies, adherence was quantified as the percentage of mean days the intervention was used, yielding a median adherence rate of 78% (IQR 61%?86%; range 31%?98%). No significant correlations were found between adherence rates and the number of eHealth device users, type of intervention, follow-up duration, number of parameters monitored, or data collection frequency. Conclusions: Reporting and definitions of patient adherence in HF studies are incomplete and inconsistent. Trends indicate a decrease in eHealth use over time. Customizing devices to meet patient needs may help mitigate this issue. Future research should offer a more detailed description of adherence to pinpoint factors that enhance patient adherence with eHealth technologies. UR - https://mhealth.jmir.org/2025/1/e63409 UR - http://dx.doi.org/10.2196/63409 ID - info:doi/10.2196/63409 ER - TY - JOUR AU - Fomo, Messaline AU - Borga, G. Liyousew AU - Abel, Thomas AU - Santangelo, S. Philip AU - Riggare, Sara AU - Klucken, Jochen AU - Paccoud, Ivana PY - 2025/6/27 TI - Empowering Capabilities of People With Chronic Conditions Supported by Digital Health Technologies: Scoping Review JO - J Med Internet Res SP - e68458 VL - 27 KW - patient empowerment KW - digital health technology KW - digital health KW - capability approach KW - chronic diseases N2 - Background: Patient empowerment is widely recognized for improving health outcomes, increasing patient satisfaction, and enhancing the overall effectiveness of health care. Digital health technologies (DHTs) contribute to this empowerment by keeping patients informed, involved, and engaged in their own health. However, more evidence is needed to better understand which aspects of empowerment patients value when using DHTs and how DHTs can support these values. Objective: Drawing on Sen?s capability approach, this paper conceptualizes patient empowerment in digital health by defining distinct capabilities, resources, and conversion factors that contribute to patient empowerment through DHTs. Methods: We based our scoping review on the methodology recommended by the Joanna Briggs Institute Manual for evidence synthesis and an a priori registered protocol. Papers were included if they focused on patient empowerment in relation to DHTs among patients with chronic diseases (cardiovascular diseases, diabetes, cancer, chronic respiratory diseases, and neurodegenerative diseases), with particular emphasis on the patient perspective. PubMed, Scopus, and Web of Science were searched for evidence published from January 2013 to April 2024. Data were extracted and thematically analyzed via a multidisciplinary workshop to identify empowerment components relevant to the capability framework, such as capabilities, DHTs as resources, and conversion factors. Results: Our analysis identified 3 core capabilities to achieve patient empowerment supported by DHTs: health information and knowledge management, self-management, and emotional and social support. DHTs as resources supported these capabilities through distinct functional components, including informing patients, communication with the health care team, monitoring, behavior change interventions, individualized feedback, or peer support, each contributing to a varying degree. Conversion factors such as demographic and socioeconomic status, digital literacy, disease status, perceived value of DHTs, sociocultural values and norms, doctor-patient relationship, connectivity, and cost influenced the development of empowering capabilities resulting from using DHTs. Conclusions: While the capabilities related to patient empowerment in DHTs were clearly distinguishable, our analysis revealed a notable interconnectedness among these components. Our conceptualization of patient empowerment serves as a valuable resource for researchers seeking to understand or assess patient empowerment via DHTs. It also provides guidance for DHT developers, helping them design DHTs that enhance valued capabilities and account for the conversion factors and ultimately promote patient empowerment across diverse population groups. UR - https://www.jmir.org/2025/1/e68458 UR - http://dx.doi.org/10.2196/68458 UR - http://www.ncbi.nlm.nih.gov/pubmed/40577044 ID - info:doi/10.2196/68458 ER - TY - JOUR AU - Terry, L. Amanda AU - Bayliss, Lorraine AU - Meredith, Leslie AU - Law, Eugene AU - Van Hoorn, Rob AU - Regan, Sandra PY - 2025/6/5 TI - A Training Program to Support Patient Engagement in Primary Health Care Research: Co-Design, Implementation, and Evaluation Study JO - J Particip Med SP - e65485 VL - 17 KW - patient engagement KW - patient-oriented research KW - patient and public involvement KW - primary health care research KW - primary care research KW - capacity-building KW - training KW - course evaluation KW - co-design N2 - Background: Patient engagement in research represents an evolution in how new knowledge is being created. Individuals and teams seeking to conduct research in this way want to learn how to best approach this aspect. Specialized training is required to ensure that these individuals and groups have the knowledge and skills to engage with and accomplish these goals. We developed a training program, called Patient-Oriented Research Training & Learning - Primary Health Care (PORTL-PHC), to address this need. Objective: The objective of this paper was to describe key learning needs and knowledge gaps regarding patient-oriented research in primary health care, as well as the design, implementation, and evaluation of the PORTL-PHC program. Methods: First, we completed a needs assessment to determine the learning needs of the program?s target groups (including patient partners, policy makers, health care practitioners, and researchers). Second, building on the results of the needs assessment, the development and implementation of the program followed a series of iterative steps, including user testing of the program?s content and format. Third, we conducted an evaluation with two components: (1) program registrants were asked to respond to questions as they progressed through the training content that explored what aspects of the content users found the most useful, suggestions for improvement, and any difficulties navigating the learning platform; and (2) program registrants were administered a questionnaire in three waves (January 2020, July 2020, and September 2021) 6 months after they had completed the program, that asked them to rate their gains in different areas of knowledge and skills regarding patient-oriented research on a 5-point Likert scale. Results: There were 205 learners who participated in the program from January 2018 to January 2022. The target audience was reached with registrants from all groups; the majority of learners were from Canada (194/205, 95%). A total of 6 main areas of knowledge needs were identified from the needs assessment, and the program was iteratively developed and refined to address these needs and our learning objectives. Suggestions for improvement received from the first component of the evaluation were used to enhance and refine the program. Of the 88 learners who had completed the program at the time of the evaluation questionnaire administration, 28 responded to our request to complete an evaluation. The results indicate that PORTL-PHC increased knowledge of patient-oriented PHC research (overall mean score of 4.36, SD .56). Learners gained skills and knowledge in identifying patient priorities in PHC (mean 4.27, SD .63), understanding the methods of patient engagement (mean 4.32, SD .65), and skills for engagement in patient-oriented research (mean 4.41, SD .50). The majority of respondents (23/28, 82%) indicated that they intended to use the information from the PORTL-PHC training program in the future. Conclusions: Through the PORTL-PHC program, we are training a new cadre of interested individuals who are committed to patient engagement in research to improve the provision of primary health care, and thus, patient outcomes. UR - https://jopm.jmir.org/2025/1/e65485 UR - http://dx.doi.org/10.2196/65485 ID - info:doi/10.2196/65485 ER - TY - JOUR AU - Sands, Z. Daniel AU - Finn, B. Nancy PY - 2025/6/4 TI - From Internet to Artificial Intelligence (Al) Bots: Symbiotic Evolutions of Digital Technologies and e-Patients JO - J Particip Med SP - e68911 VL - 17 KW - e-patient KW - participatory medicine KW - digital health technologies KW - artificial intelligence in health care KW - patient-generated health data KW - electronic health records KW - patient portals KW - telemedicine or telehealth KW - social networking in health KW - smartphones and health apps KW - internet and health care KW - health care innovation KW - digital communication tools KW - self-monitoring devices KW - health care cost transparency KW - chronic disease management KW - OpenNotes KW - 21st Century Cures Act KW - social media in health care KW - consumer health informatics KW - data sharing KW - wearable electronic devices N2 - Abstract: This paper will view the rise of the e-patient, who is ?equipped, enabled, empowered, and engaged? through the lens of the evolution of successive digital technology innovations, each building on its predecessors, creating new tools for patient empowerment. We begin with the dawn of the web and the proliferation of health websites and discuss the use of digital communication tools. We then discuss the adoption of electronic health records, which enabled the rise of patient portals. This digitization of health data, along with the rapid adoption of mobile internet access and the proliferation of health-related smartphone apps, in turn, provided a platform for patients to coproduce health care by contributing their own health data to their self-care and health care. The exchange of health information between patients and providers has also been facilitated by telehealth or telemedicine technology, which enables direct care delivery. The use of social networks in health, in use since the early days of the web, has expanded since COVID-19, when public health authorities worldwide, as well as patients, sought the use of social media channels to get connected and share information. Most recently, artificial intelligence and large language models have emerged with yet untapped potential to provide patients with the information that could improve their understanding of their conditions and treatment options. We conclude that innovations in digital health technology have symbiotically evolved with the ascendance of the e-patient, enabling improved communication, collaboration, and coordination between patients and clinicians and forging a health care system that is safer and more responsive to patient needs. UR - https://jopm.jmir.org/2025/1/e68911 UR - http://dx.doi.org/10.2196/68911 ID - info:doi/10.2196/68911 ER - TY - JOUR AU - Boutilier, Bryah AU - Warner, Grace AU - Wolfe, Brianna AU - Askari, Sorayya AU - Moody, Elaine AU - Ghanouni, Parisa AU - Packer, Tanya PY - 2025/6/3 TI - Engaging Community-Dwelling Older Adults in Research: Qualitative Substudy of Factors Impacting Participation JO - JMIR Form Res SP - e74191 VL - 9 KW - older adult KW - aging in place KW - research participation KW - community-based research KW - engagement N2 - Background: Innovative approaches to community-level data collection are crucial to inform policies and programs that support people in aging well within their communities. For example, community-level data can proactively identify unmet health needs, inform preventative care strategies, and ensure the equitable distribution of resources that enable older adults to age in place. Objective: This paper presented a substudy of a larger community-based project designed to identify community-dwelling older adults? concerns about their well-being and connect them with resources to help them age well at home. The substudy aimed to identify motivations that influence older adults? engagement in research and barriers to their participation. Methods: Data collection involved qualitative semistructured interviews with 27 older adults, with a mean age of 77 (SD 5.4), who had completed a comprehensive assessment. Purposeful sampling prioritized older adults who lived in rural areas, had more than one health condition, and represented diverse ethnicities, while attempting to reach equal numbers of participants across the participating communities. Interviews were conducted by trained research team members using an interview guide focused on reasons for research participation and perceptions of the assessment and resource action plan. Meeting minutes, gathered during 35 biweekly or monthly sessions with community coordinators, captured real-time reflections on recruitment processes, challenges, and community-specific factors influencing participation. Thematic analysis was completed using both inductive and deductive approaches. Results: Older adult participants were primarily female (n=22, 82%), of European (n=19, 70%) or Acadian (n=8, 30%) descent, university educated (n=14, 52%), with one or more chronic health conditions (n=26, 96%). Older adults reported 2 main reasons for participating: planning for the future and helping their community. At the same time, barriers to participation identified included communication challenges, fear of scams, and institutional skepticism. Participants emphasized a desire for practical outcomes from the research, especially related to aging-in-place supports. Although trust in local, personal relationships facilitated participation, skepticism toward institutions and digital communication channels were barriers to participation. Conclusions: This research highlighted the need to tailor communication strategies to older adults by understanding factors influencing engagement. Addressing institutional skepticism and leveraging trusted community members are possible strategies to overcome barriers to successful engagement in community-based research. These findings advance our understanding of why older adults participate in research and suggest ways to improve recruitment strategies. Participation was motivated not only by personal benefit but also by a strong sense of civic responsibility, social connection, and a desire to contribute to future community well-being. Framing research as community-driven and future-oriented, rather than problem- or deficit-based, studies can resonate more deeply with older adults. Integrating research within existing, trusted local networks and venues helps build legitimacy and accessibility?especially in rural contexts where institutional trust may be low and digital communication less effective. UR - https://formative.jmir.org/2025/1/e74191 UR - http://dx.doi.org/10.2196/74191 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/74191 ER - TY - JOUR AU - Ko, Stephanie AU - Cheong, Daphne AU - Low, Yun Shi AU - Shorey, Shefaly PY - 2025/6/2 TI - Hybrid Hospital-at-Home Program in Singapore: Ethnographic Study JO - J Med Internet Res SP - e66107 VL - 27 KW - interview KW - participant observation KW - qualitative KW - ethnography KW - hospital at home KW - hybrid hospital KW - ethnographic study KW - singapore KW - patient experience KW - remote care KW - healthcare delivery KW - telehealth KW - virtual consultations KW - healthcare technology N2 - Background: Hospital-at-Home (HaH) programs deliver hospital-level care in the home setting, traditionally emphasizing high-touch, in-person clinical visits. In recent years, especially during the COVID-19 pandemic, HaH models have rapidly evolved to incorporate digital technologies, enabling remote consultations and monitoring as part of care delivery. While both in-person and remote HaH modalities have individually shown positive outcomes with patient experience and clinical safety, less is known about how hybrid models, combining both modalities, are experienced by patients and caregivers. This knowledge gap is particularly salient in Asian health care systems, where strong familial caregiving norms and blended influences of Western and traditional medicine may uniquely shape care experiences. Objective: This study aims to explore the experiences of patients and caregivers receiving acute care through a combination of remote consultations and in-person visits within a hybrid HaH program in Singapore. Methods: An ethnographic qualitative research design was used to capture real-world experiences of HaH care delivery. Data collection occurred between November 2022 and May 2023 through participant observations of home visits, remote consultations, and semistructured interviews. Data were thematically analyzed using an inductive approach. Results: The participant observation included data from 25 patients and caregivers. A total of 4 participants were excluded from the in-depth semistructured interviews?3 were uncontactable and one was re-admitted to the hospital, resulting in a final interview sample of 21 participants. A total of three key themes, supported by 12 subthemes, were identified: (1) positive experiences of remote and home visits?participants expressed feelings of comfort, convenience, safety, and a sense of empowerment; (2) patient-provider dynamics?this theme highlighted the importance of in-person visits while noting challenges such as technology usability, complex medical communication, and difficulties in building rapport; and (3) complexities of the home as a care setting?participants reported environmental limitations, hidden financial burdens, the need for advance scheduling, perceived safety risks, and role confusion among caregivers. Conclusions: This study underscores the multifaceted nature of delivering acute care at home through hybrid HaH models that integrate both remote and in-person visits. Physician home visits are crucial for enhancing patient and caregiver experiences, supporting remote care. Certain patient groups with limited caregiver support, dual caregiving roles, lower digital literacy, or concerns about the feasibility of home care may require more frequent in-person visits. Public education is essential to dispel misconceptions about home-based care and align societal norms around recovery at home. Financing models should also account for hidden costs to promote equitable access. Policy makers and clinicians should consider both operational needs, such as flexible coordination and digital integration, and societal factors such as varying levels of digital literacy and strong family caregiving norms when designing hybrid HaH programs, particularly in culturally diverse settings like Singapore. UR - https://www.jmir.org/2025/1/e66107 UR - http://dx.doi.org/10.2196/66107 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/66107 ER - TY - JOUR AU - Deutsch, M. Thomas AU - Volmer, L. Léa AU - Feisst, Manuel AU - Bodenbeck, Laura AU - Hassdenteufel, Kathrin AU - Tretschock, Lara AU - Breit, Christiane AU - Stefanovic, Stefan AU - Bauer, Armin AU - Anders, Carolin AU - Weinert, Lina AU - Engler, Tobias AU - Hartkopf, D. Andreas AU - Pfeifer, Nico AU - Escher, Pascal AU - Mausch, Marc AU - Heinze, Oliver AU - Suetterlin, Marc AU - Brucker, Y. Sara AU - Schneeweiss, Andreas AU - Wallwiener, Markus PY - 2025/5/26 TI - ENABLE?App-Based Digital Capture and Intervention of Patient-Reported Quality of Life, Adverse Events, and Treatment Satisfaction in Breast Cancer: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e69855 VL - 14 KW - breast cancer KW - electronic patient-reported outcomes KW - ePRO KW - health-related quality of life KW - HRQoL KW - eHealth apps N2 - Background: In recent years, breast cancer treatment has taken the path toward personalized medicine. Based on individual tumor biology, therapy tailored to the particular subtype of cancer is increasingly being used. The aim here is to find the most suitable therapy for the disease. However, the success of therapy depends to a large extent on the patient?s adherence to treatment. This, in turn, depends on how the therapy is tolerated and how the treatment team cares for the patient. Patient-centered care seeks to identify and address the individual needs of each patient and to find the best form of care for that person. Objective: In order to improve comprehensive oncological care of patients with breast cancer, the ENABLE trial digitally recorded the health-related quality of life (HRQoL), adverse events (AEs), and patient satisfaction using a mobile smartphone app. The trial provided individualized responses to reported AEs and offered assistance. Additionally, it assessed the impact of a patient-reported outcome?based intervention across various therapy settings. Methods: Patients with breast cancer were eligible to participate in the study before neoadjuvant, adjuvant, postneoadjuvant, or palliative systemic therapy against breast cancer was initiated at the Heidelberg, Mannheim, and Tuebingen, Germany, university hospitals. After 1:1 randomization into an intervention and a control group, HRQoL assessments were performed at six fixed time points during the therapy using validated questionnaires. In the intervention group, HRQoL was also assessed briefly every week using a visual analog scale (EQ-VAS). In cases of significant deterioration, therapy-associated side effects were assessed in a graduated manner, recommendations were sent to the patient, and the treatment team was informed. Additionally, the app served as an ?eHealth companion? for education, training, and organizational support during therapy. Results: Recruitment started in March 2021; follow-up was completed in February 2024. In total, 606 patients were enrolled, and 592 patients participated in the study. Enrollment was completed in September 2023, and the last visit was in February 2024. The first results are expected to be published in Q2 2025. Conclusions: Participation in the intervention group is expected to improve treatment satisfaction, adherence, detection, and timely treatment of critical AEs. The close-meshed, weekly, brief HRQoL assessment will also be tested as a screening tool to detect relevant side effects during therapy. The study offers a more objective HRQoL assessment across treatment strategies. Trial Registration: Deutsches Register Klinischer Studien DRKS00025611; https://drks.de/search/en/trial/DRKS00025611 International Registered Report Identifier (IRRID): DERR1-10.2196/69855 UR - https://www.researchprotocols.org/2025/1/e69855 UR - http://dx.doi.org/10.2196/69855 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/69855 ER - TY - JOUR AU - Hanson, Petra AU - Abdelhameed, Farah AU - Sahir, Mohammed AU - Parsons, Nick AU - Panesar, Arjun AU - de la Fosse, Michaela AU - Summers, Charlotte AU - Kaura, Amit AU - Randeva, Harpal AU - Menon, Vinod AU - Barber, M. Thomas PY - 2025/5/16 TI - Evaluation of the Digital Support Tool Gro Health W8Buddy as Part of Tier 3 Weight Management Service: Observational Study JO - J Med Internet Res SP - e62661 VL - 27 KW - digital KW - weight management KW - innovation KW - service delivery KW - weight KW - obesity KW - chronic disease KW - intervention KW - digital health KW - mental health KW - tool KW - BMI KW - body mass index KW - United Kingdom KW - overweight KW - diabetes mellitus KW - primary care KW - healthy lifestyle KW - promotion KW - patient engagement N2 - Background: The escalating prevalence of obesity worldwide increases the risk of chronic diseases and diminishes life expectancy, with a growing economic burden necessitating urgent intervention. The existing tiered approach to weight management, particularly specialist tier 3 services, falls short of meeting the population?s needs. The emergence of digital health tools, while promising, remains underexplored in specialized National Health Service weight management services (WMSs). Objective: This service evaluation study assessed the use, effectiveness, and clinical impact of the W8Buddy digital support tool as part of the National Health Service WMS. Methods: W8Buddy, a personalized digital platform, provides a tailored weight management plan to empower individuals and was collaboratively developed with input from patients, the clinical team, and DDM Health. It launched at the University Hospitals Coventry and Warwickshire tier 3 WMS in 2022. All patients accessing University Hospitals Coventry and Warwickshire WMS were offered W8Buddy as part of standard care. Data were analyzed using independent samples t tests and Fisher exact tests for continuous and categorical outcomes, respectively. Multiple linear regression analysis explored associations between participant weight, engagement with W8Buddy, and time in the service. Results: Complete datasets for weights were available for 421 patients (220 W8Buddy group and 192 nonuser control group). W8Buddy users, predominantly female (n=185, 84.1%) and Caucasian, had a mean age of 43 years, while nonusers averaged 46 years (P=.02). Starting weights were comparable: 134 kg in the W8Buddy group and 130.2 kg in controls (P=.14); however, W8Buddy users had slightly higher starting BMI (49.6 vs 46.8 kg/m2, P=.08). A total of 33.5% (n=392) of patients activated W8Buddy and engaged with it. There was significant weight loss among W8Buddy users, with a 0.74 kg monthly loss compared to standard care (?=?.74, 95% CI ?1.28 to ?0.21; P=.007). The longer an individual stayed in this study and used W8Buddy, the more weight was lost. W8Buddy users with type 2 diabetes mellitus experienced a significant hemoglobin A1c reduction (59.8 to 51.2 mmol/mol, P=.02) compared to nonusers with type 2 diabetes. W8Buddy users also showed significant improvement across the Satisfaction With Life Scale, the Karolinska Sleepiness Scale, and quality of life visual analog scale (P<.001) during follow-up. Conclusions: Participants engaging with W8Buddy as part of a digitally enabled tier 3 WMS demonstrated significant improvements in clinical and psychological outcomes, with weight changes statistically significant compared to those not engaging with the digital tool. Reduction in hemoglobin A1c was present in both groups; however, statistical significance was only reached among those engaging with W8Buddy. These findings suggest digital tools can augment traditional services and promote patient empowerment. Future studies must provide long-term data to understand if the benefits from the digital tool are sustained. UR - https://www.jmir.org/2025/1/e62661 UR - http://dx.doi.org/10.2196/62661 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/62661 ER - TY - JOUR AU - Li, Jiaying AU - Wu, Xiaobing AU - Wu, Yibo AU - Fong, Tak Daniel Yee AU - Song, Yang AU - Xu, Siyi AU - Kim, Changhwan AU - Lin, Xiaohong AU - Pandian, Vinciya PY - 2025/5/5 TI - Physical, Mental, and Health Empowerment Disparities Across Chronic Obstructive Pulmonary Disease, Asthma, and Combined Groups and the Moderating Role of eHealth Literacy: Cross-Sectional Study JO - J Med Internet Res SP - e70822 VL - 27 KW - chronic respiratory diseases KW - chronic obstructive pulmonary disease KW - asthma KW - health outcome KW - eHealth literacy N2 - Background: Nonpharmacological management plays a key role in enhancing the quality of life for individuals with chronic obstructive pulmonary disease (COPD), asthma, or both. However, disparities in their physical, mental, and health empowerment outcomes have not been fully explored, particularly in relation to the moderating effect of eHealth literacy. Objective: This study aims to assess these disparities and examine how eHealth literacy moderates them to guide the development of tailored nonpharmacological strategies. Methods: We analyzed data from 2 waves of the nationally representative ?Psychology and Behavior Investigation of Chinese Residents? surveys to identify participants who self-reported asthma, COPD, or both. We assessed 5 physical outcomes (quality of life, physical activity, sleep quality, appetite, nicotine dependence), 4 mental outcomes (anxiety, depression, perceived stress, resilience), and 3 health empowerment measures (social support, self?efficacy, eHealth literacy). Multiple regression with Holm-Bonferroni corrections revealed health disparities and the moderation effect of eHealth literacy. Results: This unfunded study enrolled 1044 participants between June 2022 and August 2023, with data analysis completed within 7 months following data collection. The sample included 254 (24.3%) participants with asthma, 696 (66.7%) participants with COPD, and 95 (9.1%) participants with both conditions. The mean age of the participants was 48.61 (SD 19.70) years, and 536 (51.3%) participants were male. Linear regression showed that individuals with both COPD and asthma had lower health-related quality of life and higher anxiety and depression compared with those with either condition alone (b ranges from ?0.15 to 3.35). This group also showed higher nicotine dependence than asthma-only (b=0.88) and lower resilience than COPD-only groups (b=?0.76) (all adjusted P<.05). eHealth literacy significantly moderated the effect of the disease group on all outcomes except physical activity (all adjusted P for interaction <.05). Nine disease pairs showed disparities in both eHealth literacy groups, 4 only in high literacy, and 8 only in low literacy (all P<.05). Conclusions: Individuals with both COPD and asthma had poorer quality of life, greater anxiety and depression, higher nicotine dependence, and lower resilience, underscoring the need for integrated psychosocial and behavioral interventions. Although higher eHealth literacy was associated with improved quality of life, sleep quality, and resilience, it also widened disparities in anxiety and depression. Therefore, while enhancing eHealth literacy may help reduce overall health inequities among patients with chronic respiratory diseases, its potential adverse effects on mental well-being warrant careful attention. Moreover, lower eHealth literacy was linked to more pronounced disparities, indicating that outreach efforts and digital resources should be specifically designed to reach and empower vulnerable populations. Overall, our findings advocate for condition-specific, eHealth-enhanced care pathways that not only foster digital literacy but also integrate comprehensive mental health services, thereby mitigating health disparities among individuals with chronic respiratory diseases. UR - https://www.jmir.org/2025/1/e70822 UR - http://dx.doi.org/10.2196/70822 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/70822 ER - TY - JOUR AU - Mesko, Bertalan AU - deBronkart, Dave AU - Dhunnoo, Pranavsingh AU - Arvai, Nora AU - Katonai, Gellért AU - Riggare, Sara PY - 2025/5/1 TI - The Evolution of Patient Empowerment and Its Impact on Health Care?s Future JO - J Med Internet Res SP - e60562 VL - 27 KW - patient empowerment KW - patient design KW - foresight KW - future studies KW - health care future KW - patient autonomy UR - https://www.jmir.org/2025/1/e60562 UR - http://dx.doi.org/10.2196/60562 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60562 ER - TY - JOUR AU - Staehelin, Dario AU - Schmid, Damaris AU - Gerber, Felix AU - Dolata, Mateusz AU - Schwabe, Gerhard PY - 2025/4/23 TI - Empowering Community Health Workers With Scripted Medicine: Design Science Research Study JO - JMIR Hum Factors SP - e57545 VL - 12 KW - community-based health care KW - community health workers KW - collaboration engineering KW - algorithmic management KW - Scripted Medicine KW - task shifting KW - empowerment KW - mobile health KW - mHealth KW - digital health N2 - Background: The World Health Organization anticipates a shortage of 14 million health workers by 2030, particularly affecting the Global South. Community health workers (CHWs) may mitigate the shortages of professional health care workers. Recent studies have explored the feasibility and effectiveness of shifting noncommunicable disease (NCD) services to CHWs. Challenges, such as high attrition rates and variable performance, persist due to inadequate organizational support and could hamper such efforts. Research on employee empowerment highlights how organizational structures affect employees? perception of empowerment and retention. Objective: This study aims to develop Scripted Medicine to empower CHWs to accept broader responsibilities in NCD care. It aims to convey relevant medical and counseling knowledge through medical algorithms and ThinkLets (ie, social scripts). Collaboration engineering research offers insights that could help address the structural issues in community-based health care and facilitate task shifting. Methods: This study followed a design science research approach to implement a mobile health?supported, community-based intervention in 2 districts of Lesotho. We first developed the medical algorithms and ThinkLets based on insights from collaboration engineering and algorithmic management literature. We then evaluated the designed approach in a field study in the ComBaCaL (Community Based Chronic Disease Care Lesotho) project. The field study included 10 newly recruited CHWs and spanned over 2 weeks of training and 12 weeks of field experience. Following an abductive approach, we analyzed surveys, interviews, and observations to study how Scripted Medicine empowers CHWs to accept broader responsibilities in NCD care. Results: Scripted Medicine successfully conveyed the required medical and counseling knowledge through medical algorithms and ThinkLets. We found that medical algorithms predominantly influenced CHWs? perception of structural empowerment, while ThinkLets affected their psychological empowerment. The different perceptions between the groups of CHWs from the 2 districts highlighted the importance of considering the cultural and economic context. Conclusions: We propose Scripted Medicine as a novel approach to CHW empowerment inspired by collaboration engineering and algorithmic management. Scripted Medicine broadens the perspective on mobile health?supported, community-based health care. It emphasizes the need to script not only essential medical knowledge but also script counseling expertise. These scripts allow CHWs to embed medical knowledge into the social interactions in community-based health care. Scripted Medicine empowers CHW to accept broader responsibilities to address the imminent shortage of medical professionals in the Global South. UR - https://humanfactors.jmir.org/2025/1/e57545 UR - http://dx.doi.org/10.2196/57545 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57545 ER - TY - JOUR AU - Steadman, Jack AU - Saunders, Rob AU - Freestone, Mark AU - Stewart, Robert PY - 2025/4/15 TI - Subtyping Service Receipt in Personality Disorder Services in South London: Observational Validation Study Using Latent Profile Analysis JO - Interact J Med Res SP - e55348 VL - 14 KW - latent profile analysis KW - latent variable mixture modeling KW - service use KW - personality disorder KW - applied health research KW - electronic health records N2 - Background: Personality disorders (PDs) are typically associated with higher mental health service use; however, individual patterns of engagement among patients with complex needs are poorly understood. Objective: The study aimed to identify subgroups of individuals based on patterns of service receipt in secondary mental health services and examine how routinely collected information is associated with these subgroups. Methods: A sample of 3941 patients diagnosed with a personality disorder and receiving care from secondary services in South London was identified using health care records covering an 11-year period from 2007 to 2018. Basic demographic information, service use, and treatment data were included in the analysis. Service use measures included the number of contacts with clinical teams and instances of did-not-attend. Results: Using a large sample of 3941 patients with a diagnosis of PD, latent profile analysis identified 2 subgroups characterized by low and high service receipt, denoted as profile 1 (n=2879, 73.05%) and profile 2 (n=1062, 26.95%), respectively. A 2-profile solution (P<.01) was preferred over a 3-profile solution, which was nonsignificant. In unconditional (t3941,3939=19.53; P<.001; B=7.27; 95% CI 6.54-8) and conditional (t3941,3937=?3.31; P<.001; B=?74.94; 95% CI ?119.34 to ?30.56) models, cluster membership was significantly related to receipt of nursing contacts, over and above other team contacts. Conclusions: These results suggest that routinely collected data may be used to classify likely engagement subtypes among patients with complex needs. The algorithm identified factors associated with service use and has the potential to inform clinical decision-making to improve treatment for individuals with complex needs. UR - https://www.i-jmr.org/2025/1/e55348 UR - http://dx.doi.org/10.2196/55348 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55348 ER - TY - JOUR AU - Sanchez, William AU - Dewan, Ananya AU - Budd, Eve AU - Eifler, M. AU - Miller, C. Robert AU - Kahn, Jeffery AU - Macis, Mario AU - Gross, Marielle PY - 2025/4/10 TI - Decentralized Biobanking Apps for Patient Tracking of Biospecimen Research: Real-World Usability and Feasibility Study JO - JMIR Bioinform Biotech SP - e70463 VL - 6 KW - patient empowerment KW - biobanking KW - biospecimens KW - transparency KW - community engagement KW - nonfungible tokens KW - NFTs KW - blockchain technology KW - decentralized biobanking KW - pilot studies KW - technical feasibility KW - biowallet N2 - Background: Biobank privacy policies strip patient identifiers from donated specimens, undermining transparency, utility, and value for patients, scientists, and society. We are advancing decentralized biobanking apps that reconnect patients with biospecimens and facilitate engagement through a privacy-preserving nonfungible token (NFT) digital twin framework. The decentralized biobanking platform was first piloted for breast cancer biobank members. Objective: This study aimed to demonstrate the technical feasibility of (1) patient-friendly biobanking apps, (2) integration with institutional biobanks, and (3) establishing the foundation of an NFT digital twin framework for decentralized biobanking. Methods: We designed, developed, and deployed a decentralized biobanking mobile app for a feasibility pilot from 2021 to 2023 in the setting of a breast cancer biobank at a National Cancer Institute comprehensive cancer center. The Flutter app was integrated with the biobank?s laboratory information management systems via an institutional review board?approved mechanism leveraging authorized, secure devices and anonymous ID codes and complemented with a nontransferable ERC-721 NFT representing the soul-bound connection between an individual and their specimens. Biowallet NFTs were held within a custodial wallet, whereas the user experiences simulated token-gated access to personalized feedback about collection and use of individual and collective deidentified specimens. Quantified app user journeys and NFT deployment data demonstrate technical feasibility complemented with design workshop feedback. Results: The decentralized biobanking app incorporated key features: ?biobank? (learn about biobanking), ?biowallet? (track personal biospecimens), ?labs? (follow research), and ?profile? (share data and preferences). In total, 405 pilot participants downloaded the app, including 361 (89.1%) biobank members. A total of 4 central user journeys were captured. First, all app users were oriented to the ?60,000-biospecimen collection, and 37.8% (153/405) completed research profiles, collectively enhancing annotations for 760 unused specimens. NFTs were minted for 94.6% (140/148) of app users with specimens at an average cost of US $4.51 (SD US $2.54; range US $1.84-$11.23) per token, projected to US $17,769.40 (SD US $159.52; range US $7265.62-$44,229.27) for the biobank population. In total, 89.3% (125/140) of the users successfully claimed NFTs during the pilot, thereby tracking 1812 personal specimens, including 202 (11.2%) distributed under 42 unique research protocols. Participants embraced the opportunity for direct feedback, community engagement, and potential health benefits, although user onboarding requires further refinement. Conclusions: Decentralized biobanking apps demonstrate technical feasibility for empowering patients to track donated biospecimens via integration with institutional biobank infrastructure. Our pilot reveals potential to accelerate biomedical research through patient engagement; however, further development is needed to optimize the accessibility, efficiency, and scalability of platform design and blockchain elements, as well as a robust incentive and governance structure for decentralized biobanking. UR - https://bioinform.jmir.org/2025/1/e70463 UR - http://dx.doi.org/10.2196/70463 UR - http://www.ncbi.nlm.nih.gov/pubmed/40208659 ID - info:doi/10.2196/70463 ER - TY - JOUR AU - Coleman, C. Brian AU - Corcoran, L. Kelsey AU - Brandt, A. Cynthia AU - Goulet, L. Joseph AU - Luther, L. Stephen AU - Lisi, J. Anthony PY - 2025/4/2 TI - Identifying Patient-Reported Outcome Measure Documentation in Veterans Health Administration Chiropractic Clinic Notes: Natural Language Processing Analysis JO - JMIR Med Inform SP - e66466 VL - 13 KW - Veterans Health Administration KW - natural language processing KW - quality of health care KW - chiropractic KW - patient reported outcome measures KW - NLP KW - AI KW - artificial intelligence KW - veteran KW - chiropractor KW - integrated health cohort KW - musculoskeletal diagnosis KW - musculoskeletal KW - quality of care KW - care KW - PROM KW - neural network KW - chiropractic care N2 - Background: The use of patient-reported outcome measures (PROMs) is an expected component of high-quality, measurement-based chiropractic care. The largest health care system offering integrated chiropractic care is the Veterans Health Administration (VHA). Challenges limit monitoring PROM use as a care quality metric at a national scale in the VHA. Structured data are unavailable, with PROMs often embedded within clinic text notes as unstructured data requiring time-intensive, peer-conducted chart review for evaluation. Natural language processing (NLP) of clinic text notes is one promising solution to extracting care quality data from unstructured text. Objective: This study aims to test NLP approaches to identify PROMs documented in VHA chiropractic text notes. Methods: VHA chiropractic notes from October 1, 2017, to September 30, 2020, were obtained from the VHA Musculoskeletal Diagnosis/Complementary and Integrative Health Cohort. A rule-based NLP model built using medspaCy and spaCy was evaluated on text matching and note categorization tasks. SpaCy was used to build bag-of-words, convoluted neural networks, and ensemble models for note categorization. Performance metrics for each model and task included precision, recall, and F-measure. Cross-validation was used to validate performance metric estimates for the statistical and machine-learning models. Results: Our sample included 377,213 visit notes from 56,628 patients. The rule-based model performance was good for soft-boundary text-matching (precision=81.1%, recall=96.7%, and F-measure=88.2%) and excellent for note categorization (precision=90.3%, recall=99.5%, and F-measure=94.7%). Cross-validation performance of the statistical and machine learning models for the note categorization task was very good overall, but lower than rule-based model performance. The overall prevalence of PROM documentation was low (17.0%). Conclusions: We evaluated multiple NLP methods across a series of tasks, with optimal performance achieved using a rule-based method. By leveraging NLP approaches, we can overcome the challenges posed by unstructured clinical text notes to track documented PROM use. Overall documented use of PROMs in chiropractic notes was low and highlights a potential for quality improvement. This work represents a methodological advancement in the identification and monitoring of documented use of PROMs to ensure consistent, high-quality chiropractic care for veterans. UR - https://medinform.jmir.org/2025/1/e66466 UR - http://dx.doi.org/10.2196/66466 ID - info:doi/10.2196/66466 ER - TY - JOUR AU - Munce, P. Sarah E. AU - Jarrett, Clementine AU - Senthilnathan, Vjura AU - Luong, Dorothy AU - Allemang, Brooke AU - Bailey, Katherine AU - Biddiss, Elaine AU - Britto, T. Maria AU - Buchanan, Francine AU - Cassidy, Christine AU - Cross, Andrea AU - Cunningham, Jessie AU - Dimitropoulos, Gina AU - Hadland, E. Scott AU - Kastner, Monika AU - Killackey, Tieghan AU - Kokorelias, Kristina AU - Macarthur, Colin AU - Micsinszki, Samantha AU - Niles, Chavon AU - Wright, Virginia F. AU - Toulany, Alene PY - 2025/3/28 TI - Development of a Framework for Youth- and Family-Specific Engagement in Research: Proposal for a Scoping Review and Qualitative Descriptive Study JO - JMIR Res Protoc SP - e65733 VL - 14 KW - youth and family engagement KW - frameworks KW - implementation science KW - scoping review KW - qualitative N2 - Background: Youth and families play an indispensable role in health research, given their unique lived experiences and expertise. Aligning research with patients? needs, values, and preferences can significantly enhance its relevance and impact; however, recent research has highlighted various challenges and risks associated with youth and family engagement in health research. These challenges encompass the perils of tokenism, power imbalances and dynamics, questioning the motives behind engagement, and limited accessibility to patient-friendly training for patient partners, as well as inadequate training on patient engagement for researchers and the absence of equitable engagement tools. To address these risks and challenges, different patient engagement models, theories, frameworks, and guiding principles have been developed and adopted; to date, however, their transferability to youth- and family-specific engagement in research has been limited. Objective: The objectives of this project are (1) to determine the extent of the literature on the application of patient engagement models, theories, frameworks, and guiding principles in the context of youth-specific research; and (2) to determine how meaningful the key components and constructs of these models, theories, frameworks, and guiding principles are to youth and their family members. Methods: This project will use an integrated knowledge translation approach and consists of 2 phases: (1) a scoping review to identify patient engagement models, theories, frameworks and guiding principles in youth research; and (2) a qualitative descriptive study using one-on-one semistructured interviews with youth and family members to understand their conceptualization of meaningful engagement in health research. For phase 1, the following databases were searched: Medline, CINAHL, EMBASE, PsycINFO, and the Cochrane Central Register of Controlled Trials. Literature from 2013 to August 28, 2024, was captured. Primary studies using a patient engagement in research model, theory, or framework, or guiding principles, in youth will be included. The risk of bias of included studies will not be assessed. Extracted data will be quantitatively summarized using numerical counts and qualitatively using content analysis. For phase 2, we will recruit 9 to 17 youth and 9 to 17 family members. Transcripts will be analyzed using an inductive approach outlined by Braun and Clarke. Results: The project has received funding from the Canadian Institutes of Health Research. A 9-member integrated knowledge translation panel consisting of 6 youth and 3 family members has been established. Conclusions: The findings from this study will identify what is currently known about the application of patient engagement models, theories, frameworks, and guiding principles in youth-specific research and the important components of these models, theories, frameworks, and guiding principles from the perspective of youth and their families. These findings will be instrumental to developing a youth- and family-specific engagement in research framework called the UNITE framework and subsequently, a validated measure. International Registered Report Identifier (IRRID): PRR1-10.2196/65733 UR - https://www.researchprotocols.org/2025/1/e65733 UR - http://dx.doi.org/10.2196/65733 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/65733 ER - TY - JOUR AU - Pitrou, Isabelle AU - Petrangelo, Adriano AU - Besson, Charlotte AU - Pepe, Carmela AU - Waschke, Helen Annika AU - Agulnik, Jason AU - Gonzalez, V. Anne AU - Ezer, Nicole PY - 2025/3/28 TI - Lung Cancer Screening in Family Members and Peers of Patients With Lung Cancer: Protocol for a Prospective Cohort Study JO - JMIR Res Protoc SP - e58529 VL - 14 KW - lung cancer KW - low-dose CT KW - chest tomography KW - lung cancer screening KW - patient advocacy KW - early detection of cancer KW - referral and consultation KW - cohort study KW - patient empowerment KW - patient experience N2 - Background: Low-dose computed tomography (LDCT) screening is promising for the early detection of lung cancer (LC) and the reduction of LC-related mortality. Despite the implementation of LC screening programs worldwide, recruitment is challenging. While recruitment for LC screening is based on physician referrals and mass advertising, novel recruitment strategies are needed to improve the enrollment of high-risk individuals into LC screening. Objective: We aim to identify whether patients with LC can act as advocates to enroll their family members and close contacts into LC screening and whether this strategy increases screening uptake at the population level. Methods: We designed a prospective cohort study comprising 2 cohorts constituted between June 2023 and January 2024 with a prospective follow-up of 18 months. Patients with LC (cohort 1) are approached at clinics of the McGill University Health Centre, educated on tools for communicating with family members and close contacts about the benefits of LC screening, and invited to refer their close ones. Referred individuals (cohort 2) are directed to this study?s web-based questionnaire to assess their LC risk score with the PLCOm2012 (Prostate, Lung, Colorectal and Ovarian Cancer Screening Trial) prediction model. Individuals meeting the eligibility criteria for LC screening (PLCOm2012 score ?2% and aged 55-74 years) are directed toward the Quebec LC screening program. Data collected include sociodemographic characteristics, health literacy and smoking status (all participants), patient activation (cohort 1), perceived risk of LC, and generalized anxiety at baseline and at 28 days (cohort 2). LDCT completion within 18 months from referral is assessed from health records. Focus groups will identify the barriers and facilitators in the uptake of LC screening and preventative behaviors based on perceived genetic and clinical LC risks. The primary outcomes are the number of referred participants per survivor of LC and the mean risk of LC of the referred population based on PLCOm2012 scores. The secondary outcomes are the proportion of (1) participants eligible for LC screening; (2) participants eligible for screening who complete LDCT screening within 18 months of referral from a survivor of LC; (3) participants showing interest in genetic testing to inform LC risk; and (4) participants showing interest in a smoking cessation program. Multivariable logistic regression will identify the predictive factors of being referred for LC screening. PLCOm2012 scores will be compared for referred participants and controls from the provincial LC screening program. Results: Overall, 25 survivors of LC and 84 close contacts were enrolled from June 2023 to January 2024, with followed up through July 2025. The results are expected by the end of 2025. Conclusions: We describe an approach to LC screening referral, leveraging patients with LC as advocates to increase screening awareness and uptake among their family and peers. Trial Registration: ClinicalTrials.gov NCT05645731; https://clinicaltrials.gov/ct2/show/NCT05645731 International Registered Report Identifier (IRRID): DERR1-10.2196/58529 UR - https://www.researchprotocols.org/2025/1/e58529 UR - http://dx.doi.org/10.2196/58529 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58529 ER - TY - JOUR AU - Lee, Jongchan AU - Ahn, Soyeon AU - Ohn, Hun Jung AU - Kim, Sun Eun AU - Lim, Yejee AU - Kim, Won Hye AU - Park, Hee-Sun AU - Cho, Ho Jae AU - Kim, Sun-wook AU - Ryu, Jiwon AU - Kim, Jihye AU - Jang, Chul Hak AU - Kim, Nak-Hyun PY - 2025/3/12 TI - Effect of SMS Ward Round Notifications on Inpatient Experience in Acute Medical Settings: Retrospective Cohort Study JO - JMIR Hum Factors SP - e57470 VL - 12 KW - rounds KW - round-time notification KW - text messaging KW - patient experience assessment KW - patient experiences KW - patient-centeredness KW - patient participation N2 - Background: Ward rounds are an essential component of inpatient care. Patient participation in rounds is increasingly encouraged, despite the occasional complicated circumstances, especially in acute care settings. Objective: This study aimed to evaluate the effect of real-time ward round notifications using SMS text messaging on the satisfaction of inpatients in an acute medical ward. Methods: Since January 2021, a service implementing real-time ward round notifications via text messaging (WR-SMS) has been operational at a tertiary-care medical center in Korea. To assess its impact, we conducted a retrospective cohort study of patients admitted to the acute medical unit who participated in a patient experience survey. Patient satisfaction was compared between patients admitted in 2020 (pre?WR-SMS group) and 2021 (post?WR-SMS group). Results: From January 2020 to December 2021, a total of 100 patients were enrolled (53 patients in the pre?WR-SMS group and 47 patients in the post?WR-SMS group). Compared with the pre?WR-SMS group, the post?WR-SMS group showed significantly greater satisfaction about being informed about round schedules (mean 3.43, SD 0.910 vs mean 3.89, SD 0.375; P<.001) and felt more emotionally supported during admission (mean 3.49, SD 0.800 vs mean 3.87, SD 0.397; P<.001). Regarding other questionnaire scores, the post?WR-SMS group showed an overall, although statistically insignificant, improvement compared with the pre?WR-SMS group. Conclusions: Real-time round notifications using a user-friendly SMS may improve inpatient satisfaction effectively. UR - https://humanfactors.jmir.org/2025/1/e57470 UR - http://dx.doi.org/10.2196/57470 ID - info:doi/10.2196/57470 ER - TY - JOUR AU - Moody, Louise AU - Clarke, Samantha AU - Compton, Matt AU - Hughson-Gill, Rachael AU - Boardman, Felicity AU - Clark, Corinna AU - Holder, Pru AU - Bonham, R. James AU - Chudleigh, Jane PY - 2025/3/6 TI - Development of an Online Scenario-Based Tool to Enable Research Participation and Public Engagement in Cystic Fibrosis Newborn Screening: Mixed Methods Study JO - J Particip Med SP - e59686 VL - 17 KW - extended genetic testing KW - next-generation sequencing KW - cystic fibrosis KW - decision-making KW - engagement N2 - Background: Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex. Objective: This study aims to develop a stand-alone online resource to enable a range of stakeholders to understand whether and how next-generation sequencing should be incorporated into the CF screening algorithm. Methods: Around 4 development workshops with policymakers, parents, and other stakeholders informed the design of an interactive activity, including the structure, content, and questions posed. Stakeholders were recruited to take part in the development workshops via purposeful and snowball sampling methods to achieve a diversity of views across roles and organizations, with email invitations sent to representative individuals with lived, clinical, and academic experience related to CF and screening. Ten stakeholders informed the development process including those with lived experience of CF (2/10, 20%), clinicians (2/10, 20%), and representatives from relevant government, charity, and research organizations (6/10, 60%). Vignettes constructed using interview data and translated into scripts were recorded to provide short films to represent and provoke consideration of families? experiences. Participants were recruited (n=6, adults older than 18 years) to test the resulting resource. Study advertisements were circulated via physical posters and digital newsletters to recruit participants who self-identified as having a reading difficulty or having English as a second language. Results: An open access online resource, ?Cystic Fibrosis Newborn Screening: You Decide,? was developed and usability and acceptability tested to provide the ?user? (eg, a parent, the general public, or a health care professional) with an interactive scenario-based presentation of the potential outcomes of extended genetic testing, allowing them to visualize the impact on families. This included a learning workbook that explains key concepts and processes. The resulting tool facilitates public engagement with and understanding of complex genetic and screening concepts. Conclusions: Online resources such as the one developed during this work have the potential to help people form considered views and facilitate access to the perspectives of parents and the wider public on genetic testing. These may be otherwise difficult to obtain but are of importance to health care professionals and policymakers. Trial Registration: ClinicalTrials.gov NCT06299566; https://clinicaltrials.gov/study/NCT06299566 UR - https://jopm.jmir.org/2025/1/e59686 UR - http://dx.doi.org/10.2196/59686 UR - http://www.ncbi.nlm.nih.gov/pubmed/40053726 ID - info:doi/10.2196/59686 ER - TY - JOUR AU - Corser, Jenny AU - Yoldi, Irantzu AU - Reeves, D. Neil AU - Culmer, Pete AU - Venkatraman, D. Prabhuraj AU - Orlando, Giorgio AU - Turnbull, Peter Rory AU - Boakes, Paul AU - Woodin, Eric AU - Lightup, Roger AU - Ponton, Graham AU - Bradbury, Katherine PY - 2025/2/14 TI - Developing a Smart Sensing Sock to Prevent Diabetic Foot Ulcers: Qualitative Focus Group and Interview Study JO - J Particip Med SP - e59608 VL - 17 KW - diabetes KW - diabetic neuropathy KW - diabetic foot ulcer KW - podiatry KW - prevention KW - health technology KW - behavior change N2 - Background: Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs. Objective: This study explored patient and health care provider feedback on a smart sensing sock to detect shear strain and alert the wearer to change their behavior (ie, pause activity and check their feet) and considered how patient experience and attitudes toward self-care are likely to impact uptake and long-term effective engagement with the device to curate guiding principles for successful future intervention development. Methods: This qualitative study combined semistructured interviews and a focus group alongside a participant advisory group that was consulted throughout the study. In total, 20 people with diabetic neuropathy (n=16, 80% with history of diabetic foot ulcers) and 2 carers were recruited directly from podiatry clinics as well as via a recruitment network and national health mobile app for one-to-one interviews either in person or via landline or video call. A total of 6 podiatrists were recruited via professional networks for 1 virtual focus group. Participants were asked about their experience of diabetic foot health and for feedback on the proposed device, including how it might work for them in daily life or clinical practice. The data were analyzed thematically. Results: Three main themes were generated, each raising a barrier to the use of the sock complemented by potential solutions: (1) patient buy-in?challenged by lack of awareness of risk and potentially addressed through using the device to collect and record evidence to enhance clinical messaging; (2) effective engagement?challenged by difficulties accepting and actioning information and requiring simple, specific, and supportive instructions in line with podiatrist advice; and (3) sustained use?challenged by difficulties coping, with the possibility to gain control through an early warning system. Conclusions: While both patients and podiatrists were interested in the concept, it would need to be packaged as part of a wider health intervention to overcome barriers to uptake and longer-term effective engagement. This study recommends specific considerations for the framing of feedback messages and instructions as well as provision of support for health care providers to integrate the use of such smart devices into practice. The guiding principles generated by this study can orient future research and development of smart sensing devices for diabetic foot care to help optimize patient engagement and improve health outcomes. UR - https://jopm.jmir.org/2025/1/e59608 UR - http://dx.doi.org/10.2196/59608 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59608 ER - TY - JOUR AU - Heaney-Huls, Krysta AU - Shams, Rida AU - Nwefo, Ruth AU - Kane, Rachel AU - Gordon, Janna AU - Laffan, M. Alison AU - Stare, Scott AU - Dullabh, Prashila PY - 2025/1/31 TI - Electronic Health Record Data Collection Practices to Advance Standardization and Interoperability of Patient Preferences for Interpretation Services: Qualitative Study JO - J Med Internet Res SP - e62670 VL - 27 KW - health information exchange KW - interoperability KW - electronic health records KW - interpreter KW - limited English proficiency KW - communication barriers N2 - Background: Poor health outcomes are well documented among patients with a non-English language preference (NELP). The use of interpreters can improve the quality of care for patients with NELP. Despite a growing and unmet need for interpretation services in the US health care system, rates of interpreter use in the care setting are consistently low. Standardized collection and exchange of patient interpretation needs can improve access to appropriate language assistance services. Objective: This study aims to examine current practices for collecting, documenting, and exchanging information on a patient?s self-reported preference for an interpreter in the electronic health record (EHR) and the implementation maturity and adoption level of available data standards. The paper identifies standards implementation; data collection workflows; use cases for collecting, documenting, and exchanging information on a patient?s self-reported preference for an interpreter; challenges to data collection and use; and opportunities to advance standardization of the interpreter needed data element to facilitate patient-centered care. Methods: We conducted a narrative review to describe the availability of terminology standards to facilitate health care organization documentation of a patient?s self-reported preference for an interpreter in the EHR. Key informant discussions with EHR developers, health systems, clinicians, a practice-based research organization, a national standards collaborative, a professional health care association, and Federal agency representatives filled in gaps from the narrative review. Results: The findings indicate that health care organizations value standardized collection and exchange of patient language assistance service needs and preferences. Informants identified three use cases for collecting, documenting, and exchanging information on a patient?s self-reported preference for an interpreter, which are (1) person-centered care, (2) transitions of care, and (3) health care administration. The discussions revealed that EHR developers provide a data field for documenting interpreter needed data, which are routinely collected across health care organizations through commonly used data collection workflows. However, this data element is not mapped to standard terminologies, such as Logical Observation Identifiers Names and Codes (LOINC) or Systematized Medical Nomenclature for Medicine?Clinical Terminology (SNOMED-CT), consequently limiting the opportunities to electronically share these data between health systems and community-based organizations. The narrative review and key informant discussions identified three potential challenges to using information on a patient?s self-reported preference for an interpreter for person-centered care and quality improvement, which are (1) lack of adoption of available data standards, (2) limited electronic exchange, and (3) patient mistrust. Conclusions: Collecting and documenting patient?s self-reported interpreter preferences can improve the quality of services provided, patient care experiences, and equitable health care delivery without invoking a significant burden on the health care system. Although there is routine collection and documentation of patient interpretation needs, the lack of standardization limits the exchange of this information among health care and community-based organizations. UR - https://www.jmir.org/2025/1/e62670 UR - http://dx.doi.org/10.2196/62670 UR - http://www.ncbi.nlm.nih.gov/pubmed/39888652 ID - info:doi/10.2196/62670 ER - TY - JOUR AU - Duncan, L. Christina AU - Muther, F. Emily AU - Lindwall, J. Jennifer AU - Durkin, Kristine AU - Ruvalcaba, Elizabeth AU - Williamson, Eliza AU - Ahrabi-Nejad, Corrine AU - Bord, Evelyn AU - Green, Angela AU - Harrison, L. Megan AU - Polineni, Deepika PY - 2025/1/20 TI - Using Community Engagement to Create a Telecoaching Intervention to Improve Self-Management in Adolescents and Young Adults With Cystic Fibrosis: Qualitative Study JO - J Particip Med SP - e49941 VL - 17 KW - cystic fibrosis KW - telecoaching KW - self-management KW - community engagement KW - community partner KW - intervention development N2 - Background: Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management. Objective: This study aimed to devise and refine a patient-centered telecoaching intervention to foster self-management in AYA with CF using a combination of intervention development approaches, including an evidence- and theory-based approach (ie, applying existing theories and research evidence for behavior change) and a target population?centered approach (ie, intervention refinement based on the perspectives and actions of those individuals who will use it). Methods: AYA with CF, their caregivers, and health professionals from their CF care teams were recruited to take part in focus groups (or individual qualitative interviews) through a video call interface to (1) obtain perspectives on the overall structure and logistics of the intervention (ie, Step 1) and (2) refine the overall framework of the intervention and obtain feedback on feasibility, content, materials, and coach training (ie, Step 2). Qualitative data were analyzed using a reflexive thematic analysis process. Results were used to create and then modify the intervention structure and content in response to community partner input. Results: For Step 1, a total of 31 AYA and 20 clinicians took part in focus groups or interviews, resulting in 2 broad themes: (1) video call experience and (2) logistics and content of intervention. For Step 2, a total of 22 AYA, 18 clinicians, and 11 caregivers completed focus groups or interviews, yielding 3 major themes: (1) intervention structure, (2) intervention materials, and (3) session-specific feedback. Our Step 1 qualitative findings helped inform the structure (eg, telecoaching session frequency and duration) and approach of the telecoaching intervention. Step 2 qualitative results generally suggested that community partners perceived the feasibility and practicality of the proposed telecoaching intervention in promoting self-management in the face of complex treatment regimens. Extensive specific feedback was used to refine our telecoaching intervention before its efficacy testing in subsequent research. The diverse community partner input was critical in optimizing and tailoring our telecoaching intervention. Conclusions: This study documents the methods and results for engaging key community partners in creating an evidence-based behavioral intervention to promote self-management in AYA with CF. Incorporating the lived experiences and perspectives of community partners is essential when devising tailored and patient-centered interventions. UR - https://jopm.jmir.org/2025/1/e49941 UR - http://dx.doi.org/10.2196/49941 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/49941 ER - TY - JOUR AU - Lachman, Peter AU - Fitzsimons, John PY - 2025/1/17 TI - Transforming Medical Education to Make Patient Safety Part of the Genome of a Modern Health Care Worker JO - JMIR Med Educ SP - e68046 VL - 11 KW - patient safety KW - psychological safety KW - medical curriculum KW - professional competence KW - clinical competence UR - https://mededu.jmir.org/2025/1/e68046 UR - http://dx.doi.org/10.2196/68046 ID - info:doi/10.2196/68046 ER - TY - JOUR AU - Lopez, M. Cristina AU - Moreland, D. Angela AU - Amaya, Stephanie AU - Bisca, Erin AU - Mujica, Christin AU - Wilson, Tayler AU - Baker, Nathaniel AU - Richey, Lauren AU - Eckard, Ross Allison AU - Resick, A. Patricia AU - Safren, A. Steven AU - Danielson, Kmett Carla PY - 2025/1/16 TI - Assessment, Decision, Adaptation, Production, Topical Experts-Integration, Training, and Testing (ADAPT-ITT) Framework to Tailor Evidence-Based Posttraumatic Stress Disorder Treatment for People With HIV to Enhance Engagement and Adherence: Qualitative Results from a Feasibility Randomized Controlled Trial JO - JMIR Form Res SP - e64258 VL - 9 KW - PTSD KW - HIV KW - adherence KW - minoritized populations KW - adaptation KW - evidence-based KW - treatment KW - engagement KW - posttraumatic stress disorder KW - stress KW - trauma KW - antiretroviral therapy KW - therapy KW - symptoms KW - acceptability KW - self-efficacy N2 - Background: Individuals with co-occurring posttraumatic stress disorder (PTSD) and HIV are at high-risk for negative HIV-related outcomes, including low adherence to antiretroviral therapy, faster disease progression, more hospitalizations, and almost twice the rate of death. Despite high rates of PTSD in persons with HIV (PWH) and poor HIV-related health outcomes associated with PTSD, an effective evidence-based treatment for PTSD symptoms in PWH does not exist. Objective: This study aimed to describe the adaptation and theater testing of an evidence-based intervention designed for people with co-occurring PTSD and HIV. Methods: The Assessment, Decision, Adaptation, Production, Topical experts-integration, Training, and Testing (ADAPT-ITT) framework guided the formative process used to modify an evidence-based PTSD treatment (cognitive processing therapy; CPT) to meet the unique needs of PWH experiencing PTSD. With the integration of Life-Steps for Medication Adherence (Life-Steps), the adapted protocol (CPT-Life-Steps for integration of adherence; CPT-L) targeted HIV-related stigma and HIV medication adherence within a trauma-informed framework. Theater testing was completed with 7 participants to evaluate acceptability of CPT-L for PWH. The qualitative data (N=54 recordings) used to evaluate and adapt CPT-L emerged from individual interviews conducted with participants after each therapy session as well as exit interviews conducted at posttreatment data collection. Results: After challenging stigma-related appraisals, participants expressed feeling less constrained by maladaptive thoughts. These shifts translated to increased self-efficacy with both HIV-related care and mental health. Conclusions: These results indicate that trauma-informed work with PWH should consider the impact of HIV on trauma-related stuck points, intersecting identities (including living with HIV), and challenging internalized stigma. Findings provide evidence that CPT-L is acceptable and effective in addressing internalized HIV stigma that impacts PTSD symptom maintenance and HIV treatment engagement. Trial Registration: ClinicalTrials.gov; NCT05275842; https://clinicaltrials.gov/study/NCT05275842?id=NCT05275842&rank=1 International Registered Report Identifier (IRRID): RR2-10.1016/j.conctc.2023.101150 UR - https://formative.jmir.org/2025/1/e64258 UR - http://dx.doi.org/10.2196/64258 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/64258 ER - TY - JOUR AU - Song, Mingming AU - Elson, Joel AU - Bastola, Dhundy PY - 2025/1/16 TI - Digital Age Transformation in Patient-Physician Communication: 25-Year Narrative Review (1999-2023) JO - J Med Internet Res SP - e60512 VL - 27 KW - health communication KW - health IT KW - patient empowerment KW - shared decision-making KW - patient-physician relationship KW - trust N2 - Background: The evolution of patient-physician communication has changed since the emergence of the World Wide Web. Health information technology (health IT) has become an influential tool, providing patients with access to a breadth of health information electronically. While such information has greatly facilitated communication between patients and physicians, it has also led to information overload and the potential for spreading misinformation. This could potentially result in suboptimal health care outcomes for patients. In the digital age, effectively integrating health IT with patient empowerment, strong patient-physician relationships, and shared decision-making could be increasingly important for health communication and reduce these risks. Objective: This review aims to identify key factors in health communication and demonstrate how essential elements in the communication model, such as health IT, patient empowerment, and shared decision-making, can be utilized to optimize patient-physician communication and, ultimately, improve patient outcomes in the digital age. Methods: Databases including PubMed, Web of Science, Scopus, PsycINFO, and IEEE Xplore were searched using keywords related to patient empowerment, health IT, shared decision-making, patient-physician relationship, and health communication for studies published between 1999 and 2023. The data were constrained by a modified query using a multidatabase search strategy. The screening process was supported by the web-based software tool Rayyan. The review methodology involved carefully designed steps to provide a comprehensive summary of existing research. Topic modeling, trend analysis, and synthesis were applied to analyze and evaluate topics, trends, and gaps in health communication. Results: From a total of 389 selected studies, topic modeling analysis identified 3 primary topics: (1) Patient-Physician Relationship and Shared Decision-Making, (2) Patient Empowerment and Education Strategies, and (3) Health Care Systems and Health IT Implementations. Trend analysis further indicated their frequency and prominence in health communication from 1999 to 2023. Detailed examinations were conducted using secondary terms, including trust, health IT, patient-physician relationship, and patient empowerment, derived from the main topics. These terms clarified the collective impact on improving health communication dynamics. The synthesis of the role of health IT in health communication models underscores its critical role in shaping patient-centered health care frameworks. Conclusions: This review highlights the significant contributions of key topics that should be thoroughly investigated and integrated into health communication models in the digital age. While health IT plays an essential role in promoting shared decision-making and patient empowerment, challenges such as usability, privacy concerns, and digital literacy remain significant barriers. Future research should prioritize evaluating these key themes and addressing the challenges associated with health IT in health communication models. Additionally, exploring how emerging technologies, such as artificial intelligence, can support these goals may provide valuable insights for enhancing health communication. UR - https://www.jmir.org/2025/1/e60512 UR - http://dx.doi.org/10.2196/60512 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/60512 ER - TY - JOUR AU - Toben, Daan AU - de Wind, Astrid AU - van der Meij, Eva AU - Huirne, F. Judith A. AU - Anema, R. Johannes PY - 2025/1/14 TI - A Patient-Oriented Implementation Strategy for a Perioperative mHealth Intervention: Feasibility Cohort Study JO - JMIR Perioper Med SP - e58878 VL - 8 KW - perioperative care KW - recovery KW - feasibility KW - convalescence KW - patient-oriented KW - surgery KW - perioperative KW - eHealth KW - mHealth KW - tailor KW - customize KW - patient care KW - digital intervention KW - health intervention KW - patient education KW - surgical care KW - hospital care KW - digital health KW - perioperative medicine KW - elective surgery KW - technology KW - caregiver KW - mobile app KW - digital care N2 - Background: Day surgery is being increasingly implemented across Europe, driven in part by capacity problems. Patients recovering at home could benefit from tools tailored to their new care setting to effectively manage their convalescence. The mHealth application ikHerstel is one such tool, but although it administers its functions in the home, its implementation hinges on health care professionals within the hospital. Objective: We conducted a feasibility study of an additional patient-oriented implementation strategy for ikHerstel. This strategy aimed to empower patients to access and use ikHerstel independently, in contrast to implementation as usual, which hinges on the health care professional acting as gatekeeper. Our research question was ?How well are patients able to use ikHerstel independently of their health care professional?? Methods: We investigated the implementation strategy in terms of its recruitment, reach, dose delivered, dose received, and fidelity. Patients with a recent or prospective elective surgery were recruited using a wide array of materials to simulate patient-oriented dissemination of ikHerstel. Data were collected through web-based surveys. Descriptive analysis and open coding were used to analyze the data. Results: Recruitment yielded 213 registrations, with 55 patients ultimately included in the study. The sample was characterized by patients undergoing abdominal surgery, with high literacy and above average digital health literacy, and included an overrepresentation of women (48/55, 87%). The implementation strategy had a reach of 81% (63/78), with 87% (55/67) of patients creating a recovery plan. Patients were satisfied with their independent use of ikHerstel, rating it an average 7.0 (SD 1.9) of 10, and 54% (29/54) of patients explicitly reported no difficulties in using it. A major concern of the implementation strategy was conflicts in recommendations between ikHerstel and the health care professionals, as well as the resulting feelings of insecurity experienced by patients. Conclusions: In this small feasibility study, most patients were satisfied with the patient-oriented implementation strategy. However, the lack of involvement of health care professionals due to the strategy contributed to patient concerns regarding conflicting recommendations between ikHerstel and health care professionals. UR - https://periop.jmir.org/2025/1/e58878 UR - http://dx.doi.org/10.2196/58878 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/58878 ER - TY - JOUR AU - Arcia, Adriana AU - Stonbraker, Samantha AU - Mangal, Sabrina AU - Lor, Maichou PY - 2024/12/13 TI - A Practical Guide to Participatory Design Sessions for the Development of Information Visualizations: Tutorial JO - J Particip Med SP - e64508 VL - 16 KW - audiovisual aids KW - cultural competency KW - health communication KW - patient participation KW - participatory design KW - information visualization KW - health literacy KW - user-centered design KW - human-computer interaction UR - https://jopm.jmir.org/2024/1/e64508 UR - http://dx.doi.org/10.2196/64508 ID - info:doi/10.2196/64508 ER - TY - JOUR AU - Park, Yuyi AU - ­Kim, Hyungsin AU - Kim, Hakkyun PY - 2024/12/11 TI - Visualizing Empathy in Patient-Practitioner Interactions Using Eye-Tracking Technology: Proof-of-Concept Study JO - JMIR Form Res SP - e57884 VL - 8 KW - clinical empathy KW - eye tracking KW - medical communication KW - nonverbal behavior KW - doctor-patient encounters N2 - Background: Communication between medical practitioners and patients in health care settings is essential for positive patient health outcomes. Nonetheless, researchers have paid scant attention to the significance of clinical empathy in these interactions as a practical skill. Objective: This study aims to understand clinical empathy during practitioner-patient encounters by examining practitioners? and patients? verbal and nonverbal behaviors. Using eye-tracking techniques, we focused on the relationship between traditionally assessed clinical empathy and practitioners? actual gaze behavior. Methods: We used mixed methods to understand clinical encounters by comparing 3 quantitative measures: eye-tracking data, scores from the Korean version of the Jefferson Scale of Empathy?Health Professional, and Consultation and Relational Empathy survey scores. We also conducted qualitative interviews with patients regarding their encounters. Results: One practitioner and 6 patients were involved in the experiment. Perceived empathy on the part of the practitioner was notably higher when the practitioner focused on a patient?s mouth area during the consultation, as indicated by gaze patterns that focused on a patient?s face. Furthermore, an analysis of areas of interest revealed different patterns in interactions with new as opposed to returning patients. Postconsultation interviews suggested that task-oriented and socially oriented empathy are critical in aligning with patients? expectations of empathetic communication. Conclusions: This proof-of-concept study advocates a multidimensional approach to clinical empathy, revealing that a combination of verbal and nonverbal behaviors significantly reinforces perceived empathy from health care workers. This evolved paradigm of empathy underscores the profound consequences for medical education and the quality of health care delivery. UR - https://formative.jmir.org/2024/1/e57884 UR - http://dx.doi.org/10.2196/57884 ID - info:doi/10.2196/57884 ER - TY - JOUR AU - Naccarella, Lucio AU - Rawstorn, Charles Jonathan AU - Kelly, Jaimon AU - Quested, Eleanor AU - Jenkinson, Stuart AU - Kwasnicka, Dominika PY - 2024/12/10 TI - Unlocking the Potential for Implementation of Equitable, Digitally Enabled Citizen Science: Multidisciplinary Digital Health Perspective JO - J Med Internet Res SP - e50491 VL - 26 KW - citizen science KW - digital health KW - equity KW - implementation science KW - community KW - research KW - health inequality KW - health equity KW - health integration KW - mental well-being KW - well-being UR - https://www.jmir.org/2024/1/e50491 UR - http://dx.doi.org/10.2196/50491 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/50491 ER - TY - JOUR AU - Meyer, Lene AU - Køster-Rasmussen, Rasmus AU - Christiansen, Lindahl Ann-Kathrin AU - Heitmann, Lilienthal Berit AU - Vesterlund, Kingo Gitte AU - Larsen, Christian Sofus AU - Specht, Olmer Ina AU - Thorsteinsdottir, Fanney AU - Steinbo, Frøhlke Emma Katrine AU - Appel, Lundmark Clara AU - Sigurdardottir, Agusta Gudrun AU - Reventlow, Susanne AU - Waldorff, Boch Frans AU - Sandholdt, Thiel Catharina PY - 2024/11/29 TI - Developing a Weight-Neutral Health Intervention in Denmark: Protocol for a Co-Design Process JO - JMIR Public Health Surveill SP - e59455 VL - 10 KW - obesity KW - weight management KW - complex intervention KW - patient engagement KW - health intervention KW - Denmark KW - Danish KW - lifestyle KW - weight loss KW - weight reduction KW - stigma KW - neutral health KW - human-centered design KW - dissemination KW - podcast KW - social media KW - feasibility study KW - public health KW - surveillance N2 - Background: Lifestyle interventions for weight loss are generally ineffective in achieving clinically meaningful long-term reductions in body weight and may contribute to negative behavior such as weight cycling or disordered eating. Negative focus on high weight may also contribute to weight stigma. Weight stigma includes negative attitudes and discriminatory behavior toward people with big bodies and can result in psychological stress and unfavorable health outcomes. Taken together, it is possible that the potential harms of lifestyle-based weight loss interventions may exceed the potential benefits. Weight-neutral health (WNH) has emerged as an alternative strategy advocating for size diversity, intuitive eating, and joyful physical movement, all without placing emphasis on weight reduction. Objective: This protocol outlines the study design for the co-design process of developing a WNH complex intervention, engaging relevant stakeholders in Denmark. Methods: We base our understanding of WNH on the principles from Health at Every Size: body acceptance, joyful movement, intuitive eating, and weight stigma reduction. The co-design development process is based on the Medical Research Council?s framework for complex interventions and applies methods from human-centered design through 4 iterative design phases of engaging stakeholders?discover: search existing literature, and conduct interviews with Danish municipal stakeholders working with WNH and other expert stakeholders; define: coproduction of seminars with health professionals (HPs) with knowledge of WNH, and semistructured interviews with people with BMI?30 kg/m2 who have participated in existing WNH interventions; design: content-creating workshops with HPs and people with BMI?30 kg/m2; and validate: evaluate seminars, plan feasibility, and produce materials. The data will be analyzed thematically to build a scaffold for the intervention activities and components. In further analysis, we will explore how health is performed, meaning the actions and dialogues that arise when dealing with health guidelines, the societal body, weight, and health expectations, in the context of the intervention. Results: The project is fully funded. As of August 2024, the co-design process was in the closing phase. In total, 15 HPs were included, some of whom have larger body sizes. This provides a dual perspective, combining their personal experiences of living with a high BMI with their professional expertise. In total, 16 people with BMI?30 kg/m2 have generously shared their experiences with WNH programs, including the difficulties of moving away from external demands and personal wishes for weight loss. Their contributions have nuanced and unfolded our understanding of the principles of WNH in a Danish setting. Conclusions: The intervention designed in and from the co-design process will be tested for feasibility in 2025. The findings from the feasibility study will inform a future randomized controlled trial and present novel findings in the field of health management. The long-term goal is to implement the intervention in a Danish municipal setting free of charge. UR - https://publichealth.jmir.org/2024/1/e59455 UR - http://dx.doi.org/10.2196/59455 ID - info:doi/10.2196/59455 ER - TY - JOUR AU - Su, Jingyuan AU - Shen, Ning Kathy AU - Guo, Xitong PY - 2024/11/29 TI - Impact of Reverse Empowerment and Proactive Motivations on Physicians? Online Knowledge Sharing in Digital Platforms: Survey Study JO - J Med Internet Res SP - e59904 VL - 26 KW - physician behavior KW - online knowledge sharing KW - proactivity KW - patient empowerment KW - digital platforms KW - health communication N2 - Background: Digital platforms offer a venue for patients and physicians to exchange health information and provide health care services outside traditional organizational contexts. Previous studies have seldom focused on the factors that drive the proactivity of physicians? online behavior. Additionally, there is limited research exploring the influence of patients on physicians? online behavior, particularly from the perspective of patients possessing power. Objective: This study aims to investigate the effect of patient-empowering behaviors on physicians? online knowledge sharing and uncover the potential mechanisms of proactivity. Based on the proactive motivational model and empowerment theory, we propose the existence of a reverse empowerment process, where empowerment flows from patients to physicians. We suggest that patient-empowering behaviors may drive physicians? online knowledge sharing as a form of proactivity. Specifically, 3 proactive motivational states?knowledge-sharing self-efficacy, sharing meaning, and positive professional affect?mediate this relationship. Additionally, platform extrinsic rewards, as a contextual factor, have a moderating effect. Methods: To validate our proposed research model, we conducted a survey in China using the WJX platform, targeting physicians engaged in online knowledge sharing. The measurement instrument utilizes validated items adapted from prior research, using a 5-point Likert scale. We collected 257 valid responses, ensuring that participation was both anonymous and voluntary. Data analysis was performed in 2 stages. The first stage assessed the measurement model for reliability and validity, using the Harman 1-factor test and confirmatory factor analysis. The second stage used partial least squares-structural equation modeling to examine the direct, moderation, and mediation effects among the constructs, with bootstrapping used for significance testing. This comprehensive approach ensures a robust analysis of the proposed hypotheses and contributes to the overall validity of our research model. Results: Perceived patient-empowering behaviors significantly and positively influence physicians? online knowledge sharing (?=0.27, P<.001). Knowledge-sharing self-efficacy (effect=0.06, P=.04), sharing meaning (effect=0.12, P<.001), and positive professional affect (effect=0.10, P=.003) each partially mediate the effect of patient-empowering behaviors on physicians? online knowledge sharing. The overall proactive motivational states play a complete mediation role, meaning the entire indirect effect of the model is significant (effect=0.29, P<.001), while the direct effect in the model is nonsignificant (effect=0.07, P=.26). Additionally, platform extrinsic rewards significantly and negatively moderate the effect of sharing meaning on physicians? online knowledge sharing (?=?0.13, P=.001). Conclusions: This study is the first to recognize and examine proactivity as an alternative mediating mechanism for physicians? online knowledge sharing, highlighting the active role of patients in empowering physicians. It makes a significant contribution to the existing literature on empowerment, eHealth, and proactive behavior. Additionally, the findings offer valuable guidance for designing and managing digital platforms to ensure service sustainability. UR - https://www.jmir.org/2024/1/e59904 UR - http://dx.doi.org/10.2196/59904 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59904 ER - TY - JOUR AU - Palacios, E. Jorge AU - Erickson-Ridout, K. Kathryn AU - Paik Kim, Jane AU - Buttlaire, Stuart AU - Ridout, Samuel AU - Argue, Stuart AU - Tregarthen, Jenna PY - 2024/11/27 TI - Effects of a Digital Therapeutic Adjunct to Eating Disorder Treatment on Health Care Service Utilization and Clinical Outcomes: Retrospective Observational Study Using Electronic Health Records JO - JMIR Ment Health SP - e59145 VL - 11 KW - digital therapeutics KW - app-augmented therapy KW - eating disorders KW - health care utilization KW - costs KW - real-world data KW - depression KW - emergency department KW - outpatient care KW - eating KW - treatment KW - therapy KW - retrospective analysis KW - electronic health record KW - patient KW - app KW - outpatient N2 - Background: The need for scalable solutions facilitating access to eating disorder (ED) treatment services that are efficient, effective, and inclusive is a major public health priority. Remote access to synchronous and asynchronous support delivered via health apps has shown promise, but results are so far mixed, and there are limited data on whether apps can enhance health care utilization. Objective: This study aims to examine the effects of app-augmented treatment on clinical outcomes and health care utilization for patients receiving treatment for an ED in outpatient and intensive outpatient levels of care. Methods: Recovery Record was implemented in outpatient and intensive outpatient services in a California-based health maintenance organization. We examined outcomes for eligible patients with ED by comparing clinical and service utilization medical record data over a 6-month period after implementation with analogous data for the control group in the year prior. We used a logistic regression model and inverse-weighted estimates of the probability of treatment to adjust for treatment selection bias. Results: App-augmented treatment was associated with a significant decrease in emergency department visits (P<.001) and a significant increase in outpatient treatment utilization (P<.001). There was a significantly larger weight gain for patients in low-weight categories (ie, underweight, those with anorexia, or those with severe anorexia) with app-augmented treatment (treatment effect: 0.74, 0.25, and 0.35, respectively; P=.02), with a greater percentage of patients moving into a higher BMI class (P=.01). Conclusions: Integrating remote patient engagement apps into ED treatment plans can have beneficial effects on both clinical outcomes and service utilization. More research should be undertaken on long-term efficacy and cost-effectiveness to further explore the impact of digital health interventions in ED care. UR - https://mental.jmir.org/2024/1/e59145 UR - http://dx.doi.org/10.2196/59145 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/59145 ER - TY - JOUR AU - Ahn, Suhwoo AU - Lee, Chul-joo AU - Bae, Inhwan PY - 2024/11/25 TI - Patients? Use of Electronic Health Records Facilitates Patient-Centered Communication: Findings From the 2017 Health Information National Trends Survey JO - J Med Internet Res SP - e50476 VL - 26 KW - electronic health record KW - health information efficacy KW - patient-centered communication KW - social support KW - patient-centered care N2 - Background: Patient-centered communication refers to interaction between patients and health professionals that considers patients? preferences and empowers patients to contribute to their own care. Research suggests that patient-centered communication promotes patients? satisfaction with care, trust in physicians, and competence in their abilities to manage their health. Objective: The study aims to explore the role of patients? use of electronic health records (EHRs) in promoting patient-centered communication. Specifically, we investigated how health information efficacy mediates the association of EHR use with patient-centered communication and whether and how the relationship between EHR use and health information efficacy varies according to patients? perceived social support levels. Methods: We conducted mediation and multigroup analyses using nationally representative data from the Health Information National Trends Survey 5 cycle 1 conducted in the United States (N=3285). Among respondents, we analyzed those who received care from health professionals over the previous year (2823/3285, 85.94%). Results: EHR use by patients was associated with high levels of health information efficacy (unstandardized coefficient=0.050, SE 0.024; P=.04). In turn, health information efficacy was positively related to patient-centered communication (unstandardized coefficient=0.154, SE 0.024; P<.001). The indirect pathway from EHR use to patient-centered communication, mediated by health information efficacy, was statistically significant (unstandardized coefficient=0.008, SE 0.004; P=.04). Among patients with high social support (2349/2823, 83.21%), EHR use was not significantly associated with health information efficacy (unstandardized coefficient=0.038, SE 0.026; P=.15), although health information efficacy was linked to high levels of patient-centered communication (unstandardized coefficient=0.151, SE 0.030; P<.001). The indirect relationship in this group was not significant (unstandardized coefficient=0.006, SE 0.004; P=.11). However, among those with low social support (474/2823, 16.79%), EHR use was positively associated with health information efficacy (unstandardized coefficient=0.155, SE 0.048; P=.001), which in turn relates to high levels of patient-centered communication (unstandardized coefficient=0.137, SE 0.050; P=.01). The indirect pathway was also significant (unstandardized coefficient=0.021, SE 0.010; P=.03). Conclusions: Patients who use EHRs may build health information efficacy, which seems to promote communication between patients and health care providers. This indirect pathway was not detected among patients with high social support. However, among those with low social support, EHR use seems to enhance health information efficacy, which may in turn facilitate patient-centered communication. Given the nature of the dataset used, the findings of this study are more relevant to the United States than other contexts. UR - https://www.jmir.org/2024/1/e50476 UR - http://dx.doi.org/10.2196/50476 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/50476 ER - TY - JOUR AU - van Aubel, Evelyne AU - Vaessen, Thomas AU - Uyttebroek, Lotte AU - Steinhart, Henrietta AU - Beijer-Klippel, Annelie AU - Batink, Tim AU - van Winkel, Ruud AU - de Haan, Lieuwe AU - van der Gaag, Mark AU - van Amelsvoort, Thérèse AU - Marcelis, Machteld AU - Schirmbeck, Frederike AU - Reininghaus, Ulrich AU - Myin-Germeys, Inez PY - 2024/11/21 TI - Engagement and Acceptability of Acceptance and Commitment Therapy in Daily Life in Early Psychosis: Secondary Findings From a Multicenter Randomized Controlled Trial JO - JMIR Form Res SP - e57109 VL - 8 KW - acceptance and commitment therapy KW - ACT KW - first episode of psychosis KW - FEP KW - ultrahigh risk for psychosis KW - UHR KW - ecological momentary intervention KW - EMI KW - mobile health KW - mHealth KW - blended care KW - mobile phone N2 - Background: Acceptance and commitment therapy (ACT) is promising in the treatment of early psychosis. Augmenting face-to-face ACT with mobile health ecological momentary interventions may increase its treatment effects and empower clients to take treatment into their own hands. Objective: This study aimed to investigate and predict treatment engagement with and acceptability of acceptance and commitment therapy in daily life (ACT-DL), a novel ecological momentary intervention for people with an ultrahigh risk state and a first episode of psychosis. Methods: In the multicenter randomized controlled trial, 148 individuals with ultrahigh risk or first-episode psychosis aged 15-65 years were randomized to treatment as usual only (control) or to ACT-DL combined with treatment as usual (experimental), consisting of 8 face-to-face sessions augmented with an ACT-based smartphone app, delivering ACT skills and techniques in daily life. For individuals in the intervention arm, we collected data on treatment engagement with and acceptability of ACT-DL during and after the intervention. Predictors of treatment engagement and acceptability included baseline demographic, clinical, and functional outcomes. Results: Participants who received ACT-DL in addition to treatment as usual (n=71) completed a mean of 6 (SD 3) sessions, with 59% (n=42) of participants completing all sessions. App engagement data (n=58) shows that, on a weekly basis, participants used the app 13 times and were compliant with 6 of 24 (25%) notifications. Distribution plots of debriefing scores (n=46) show that 85%-96% of participants reported usefulness on all acceptability items to at least some extent (scores ?2; 1=no usefulness) and that 91% (n=42) of participants reported perceived burden by number and length of notifications (scores ?2; 1=no burden). Multiple linear regression models were fitted to predict treatment engagement and acceptability. Ethnic minority backgrounds predicted lower notification response compliance (B=?4.37; P=.01), yet higher app usefulness (B=1.25; P=.049). Negative (B=?0.26; P=.01) and affective (B=0.14; P=.04) symptom severity predicted lower and higher ACT training usefulness, respectively. Being female (B=?1.03; P=.005) predicted lower usefulness of the ACT metaphor images on the app. Conclusions: Our results corroborate good treatment engagement with and acceptability of ACT-DL in early psychosis. We provide recommendations for future intervention optimization. Trial Registration: OMON NL46439.068.13; https://onderzoekmetmensen.nl/en/trial/24803 UR - https://formative.jmir.org/2024/1/e57109 UR - http://dx.doi.org/10.2196/57109 UR - http://www.ncbi.nlm.nih.gov/pubmed/39570655 ID - info:doi/10.2196/57109 ER - TY - JOUR AU - KC, Sukriti AU - Papoutsi, Chrysanthi AU - Reidy, Claire AU - Gudgin, Bernard AU - Powell, John AU - Majeed, Azeem AU - Greaves, Felix AU - Laverty, A. Anthony PY - 2024/11/13 TI - Differences in Use of a Patient Portal Across Sociodemographic Groups: Observational Study of the NHS App in England JO - J Med Internet Res SP - e56320 VL - 26 KW - digital health KW - patient portals KW - technological health divide KW - eHealth KW - inequality KW - observational KW - ecological KW - England KW - app KW - patient portal KW - disparities KW - deprivation KW - demographics KW - long-term health care KW - negative binomial regression model KW - intervention KW - patient support KW - general practice KW - digital technology KW - patient KW - youth KW - N2 - Background: The adoption of patient portals, such as the National Health Service (NHS) App in England, may improve patient engagement in health care. However, concerns remain regarding differences across sociodemographic groups in the uptake and use of various patient portal features, which have not been fully explored. Understanding the use of various functions across diverse populations is essential to ensure any benefits are equally distributed across the population. Objective: This study aims to explore differences in the use of NHS App features across age, sex, deprivation, ethnicity, long-term health care needs, and general practice (GP) size categories. Methods: We used weekly NHS App use data from the NHS App dashboard for 6386 GPs in England from March 2020 to June 2022. Negative binomial regression models explored variations in weekly rates of NHS App features used (registrations, log-ins, prescriptions ordered, medical record views, and appointments booked). Outcomes were measured as weekly rates per 1000 GP-registered patients, and we conducted separate models for each outcome. Regression models included all covariates mentioned above and produced incident rate ratios, which we present here as relative percentages for ease of interpretation. GP-level covariate data on sociodemographic variables were used as categorical variables in 5 groups for deprivation (Q1=least deprived practices and Q5=most deprived practices) and 4 groups for all other variables (Q1=least deprived practices and Q4=most deprived practices). Results: We found variations in the use of different features overall and across sociodemographic categories. Fully adjusted regression models found lower use of features overall in more deprived practices (eg, Q5 vs Q1: registrations=?34%, log-ins=?34.9%, appointments booked=?39.7%, medical record views=?32.3%, and prescriptions ordered=?9.9%; P<.001). Practices with greater proportions of male patients also had lower levels of NHS App use (eg, Q4 vs Q1: registration=?7.1%, log-in=?10.4%, and appointments booked=?36.4%; P<.001). Larger practices had an overall higher use of some NHS App features (eg, Q4 vs Q1: registration=3.2%, log-ins=11.7%, appointments booked=73.4%, medical record views=23.9%, and prescriptions ordered=20.7%; P<.001), as well as those with greater proportions of White patients (eg, Q4 vs Q1: registration=1.9%, log-ins=9.1%, appointments booked=14.1%, medical record views=28.7%, and prescriptions ordered=130.4%; P<.001). Use patterns varied for practices with greater proportions of patients with long-term health care needs (eg, Q4 vs Q1: registrations=?3.6%, appointments booked=?20%, and medical record views=6%; P?.001). Conclusions: This study highlights that the use of the NHS App features varied across sociodemographic groups. In particular, it is used less by people living in more deprived areas. Tailored interventions and patient support are required to ensure that any benefits from the NHS App are spread equally throughout the population. UR - https://www.jmir.org/2024/1/e56320 UR - http://dx.doi.org/10.2196/56320 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56320 ER - TY - JOUR AU - Gordon, P. Nancy AU - Yin, Chelsea AU - Lo, C. Joan PY - 2024/11/7 TI - Examining Whether Patient Portal and Video Visit Use Differs by Race and Ethnicity Among Older Adults in a US Integrated Health Care Delivery System: Cross-Sectional Electronic Health Record and Survey-Based Study JO - JMIR Aging SP - e63814 VL - 7 KW - patient portal use KW - video visit use KW - older adults KW - racial and ethnic differences KW - telehealth KW - mobile phone N2 - Background: Health care systems are increasingly encouraging patients to use patient portals and participate in video visits. However, there is limited information about how portal use differs among older adults. Objective: This study aimed to understand how patient portal and video visit use differed by age, race, and ethnicity among older adult patients with access to the same digital health resources. Methods: This cross-sectional study used electronic health record and survey data for adults aged 65 to 85 years who were members of a large Northern California health care delivery system throughout 2019 and 2020. The electronic health record cohort (N=471,152) included 320,686 White, 35,892 Black, 44,922 Latino, 20,786 Chinese, 28,732 Filipino, 8473 South Asian, 6716 Japanese, 2930 Vietnamese, and 2015 Korean adults. Racial and ethnic group and age group (65 to 75 years vs 76 to 85 years) differences in having a patient portal account by December 2020, the performance of 2 portal activities (sending ?1 message to a clinician in 2019 or 2020 and viewing ?1 laboratory test result in 2020), and having ?1 video visit during 2020 were examined. Modified log-Poisson regression was used to examine prevalence ratios for portal and video visit use, comparing racial and ethnic groups to White adults and Asian ethnic groups to Chinese adults after adjusting for sex and age. Data from a 2020 member survey were used to compare internet use factors among 2867 White, 306 Black, 343 Latino, 225 Chinese, and 242 Filipino adults. Results: Black, Latino, and Filipino adults were less likely to have a patient portal account than White adults, and Filipino adults were less likely to have a patient portal account than Chinese adults. Black, Latino, Filipino, Korean, Vietnamese, and South Asian adults were less likely to have sent messages and viewed test results than White adults, while Chinese and Japanese adults? use of these features was similar to that of White adults. Filipino, Vietnamese, and Korean adults were less likely to have performed the aforementioned activities than Chinese adults. Video visit use was lower among Black and Latino adults and higher among Chinese and South Asian adults compared with White adults (aged 76 to 85 years) and lower among Filipino, Korean, and Vietnamese adults compared to Chinese adults. Survey data suggested that underlying differences in internet use may partially explain the lower use of messaging by Black, Latino, and Filipino adults compared with White and Chinese adults. Conclusions: Patient portal and video visit use differed by race, ethnicity, and age group among older adult patients with access to the same patient portal. Internet use factors may contribute to these differences. Differences in patient portal and video visit use across Asian subgroups underscore the importance of disaggregating use data by Asian ethnicity. UR - https://aging.jmir.org/2024/1/e63814 UR - http://dx.doi.org/10.2196/63814 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/63814 ER - TY - JOUR AU - Weeks, Lori AU - Allen, Kathleen AU - Holtmann, Catherine AU - Leger, Joni AU - Dupuis-Blanchard, Suzanne AU - MacQuarrie, Colleen AU - Macdonald, Marilyn AU - Moody, Elaine AU - Stilwell, Christie AU - Helpard, Heather AU - Gagnon, Danie PY - 2024/10/30 TI - The Implementation of the Advocacy Intervention for Midlife and Older Women Who Have Experienced Intimate Partner Violence: Protocol for a Randomized Controlled Trial JO - JMIR Res Protoc SP - e57886 VL - 13 KW - intimate partner violence KW - intervention KW - virtual KW - midlife KW - aging N2 - Background: Midlife and older women who experience intimate partner violence (IPV) often have less access to supports and services than younger women. There is far less focus on research and supports for midlife and older women compared to younger women experiencing IPV, and often, neither elder abuse nor IPV services meet their needs. Few interventions are available to meet the needs of midlife and older women. Objective: The goal of this randomized controlled trial is to test the effectiveness of an advocacy intervention for midlife and older women who experience IPV and to learn from the experiences of those who implement and participate in the program. Methods: This trial is a 2-arm, unblinded, parallel, pragmatic randomized controlled trial with a qualitative component. Eligible participants will be women who live in the Maritime provinces of Canada (New Brunswick, Nova Scotia, and Prince Edward Island), who are in midlife and older (aged approximately ?50 years), and who are currently in a relationship with an abusive partner or have recently left an abusive partner. Facilitators will be trained to deliver the intervention. The intervention will be entirely virtual and will consist of 2 components: (1) an empowerment component, which will involve sharing resources and information with the women; and (2) a social support component, which will include providing support and encouragement to women for 12 weeks. Quantitative effectiveness data will be collected from all trial participants at baseline, 3 months after the intervention, and 9 months after the intervention about the incidence and severity of IPV, physical and mental health, and safety behaviors and strategies. Qualitative interviews will be conducted with the facilitators and intervention group participants. Control group participants will receive a static, nontailored version of the advocacy intervention for midlife and older women (AIM) intervention materials after baseline data collection. Results: A total of 12 facilitators have been trained to deliver the AIM intervention to trial participants. Participant recruitment and data collection will be completed in January 2025. Data analysis will continue throughout the data collection period, and the results will be disseminated by December 2025. Conclusions: This research will result in the adaptation and testing of a program to support and empower midlife and older women in the Maritime provinces of Canada who experience IPV. Trial Registration: International Standard Randomized Controlled Trial Registry ISRCTN30646991; https://doi.org/10.1186/ISRCTN30646991 International Registered Report Identifier (IRRID): DERR1-10.2196/57886 UR - https://www.researchprotocols.org/2024/1/e57886 UR - http://dx.doi.org/10.2196/57886 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/57886 ER - TY - JOUR AU - Cotter, M. Lynne AU - Shah, Dhavan AU - Brown, Kaitlyn AU - Mares, Marie-Louise AU - Landucci, Gina AU - Saunders, Sydney AU - Johnston, C. Darcie AU - Pe-Romashko, Klaren AU - Gustafson, David AU - Maus, Adam AU - Thompson, Kasey AU - Gustafson, H. David PY - 2024/10/30 TI - Decoding the Influence of eHealth on Autonomy, Competence, and Relatedness in Older Adults: Qualitative Analysis of Self-Determination Through the Motivational Technology Model JO - JMIR Aging SP - e56923 VL - 7 KW - self-determination theory KW - usability KW - mobile technology model KW - aging KW - eHealth KW - mobile health KW - mHealth KW - smart displays KW - video calls KW - older adult KW - chronic conditions KW - mobile phone N2 - Background: Older adults adopt and use eHealth systems to build autonomy, competence, and relatedness and engage in healthy behaviors. The motivational technology model posits that technology features, such as those on websites, smart displays, and mobile phones, must allow for navigability, interactivity, and customizability, which spur feelings of self-determination and intrinsic motivation. We studied ElderTree, an online system for older adults that provides on-demand videos of healthy living content, self-monitoring, and weekly researcher-hosted video meetings. Objective: We aimed to understand the theoretical crossover between the motivational technology model and self-determination theory using features of ElderTree to understand the usability of the technology and how it may support older adults? autonomy, competence, and relatedness. Methods: Drawing participants from a randomized controlled trial of a mobile health app for older adults with multiple chronic conditions, we conducted qualitative interviews with 22 older adults about their use of the app; the interviews were coded using qualitative thematic analysis. Results: Older adults did find that features within ElderTree such as content available on demand, good navigation, and weekly researcher-led video calls supported feelings of autonomy, competence, and relatedness, respectively. Individual differences such as a background using computers also influenced participants? experiences with the smart displays. Conclusions: Participants confirmed the features that increased internal motivation, such as interactivity correlating with feelings of relatedness, but they also found other ways to support autonomous health behavior change beyond narrow views of navigability, interactivity, and customization. UR - https://aging.jmir.org/2024/1/e56923 UR - http://dx.doi.org/10.2196/56923 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56923 ER - TY - JOUR AU - Sagar, Ankita PY - 2024/9/27 TI - Blood Bonds: Transforming Blood Donation Through Innovation, Inclusion, and Engagement JO - JMIR Perioper Med SP - e63817 VL - 7 KW - blood donor KW - engagement KW - digital health KW - health technology KW - EBM KW - inclusive KW - inclusivity KW - shared decision-making KW - evidence-based medicine KW - blood shortage KW - blood product KW - transfusion KW - transfusions KW - donor KW - donation KW - hematology KW - perioperative medicine KW - surgery UR - https://periop.jmir.org/2024/1/e63817 UR - http://dx.doi.org/10.2196/63817 UR - http://www.ncbi.nlm.nih.gov/pubmed/39331421 ID - info:doi/10.2196/63817 ER - TY - JOUR AU - Eaton, Cyd AU - Vallejo, Natalie AU - McDonald, Xiomara AU - Wu, Jasmine AU - Rodríguez, Rosa AU - Muthusamy, Nishanth AU - Mathioudakis, Nestoras AU - Riekert, A. Kristin PY - 2024/9/24 TI - User Engagement With mHealth Interventions to Promote Treatment Adherence and Self-Management in People With Chronic Health Conditions: Systematic Review JO - J Med Internet Res SP - e50508 VL - 26 KW - mobile health KW - mHealth KW - digital health KW - treatment adherence KW - self-management KW - user engagement KW - chronic health conditions KW - mobile phone N2 - Background: There are numerous mobile health (mHealth) interventions for treatment adherence and self-management; yet, little is known about user engagement or interaction with these technologies. Objective: This systematic review aimed to answer the following questions: (1) How is user engagement defined and measured in studies of mHealth interventions to promote adherence to prescribed medical or health regimens or self-management among people living with a health condition? (2) To what degree are patients engaging with these mHealth interventions? (3) What is the association between user engagement with mHealth interventions and adherence or self-management outcomes? (4) How often is user engagement a research end point? Methods: Scientific database (Ovid MEDLINE, Embase, Web of Science, PsycINFO, and CINAHL) search results (2016-2021) were screened for inclusion and exclusion criteria. Data were extracted in a standardized electronic form. No risk-of-bias assessment was conducted because this review aimed to characterize user engagement measurement rather than certainty in primary study results. The results were synthesized descriptively and thematically. Results: A total of 292 studies were included for data extraction. The median number of participants per study was 77 (IQR 34-164). Most of the mHealth interventions were evaluated in nonrandomized studies (157/292, 53.8%), involved people with diabetes (51/292, 17.5%), targeted medication adherence (98/292, 33.6%), and comprised apps (220/292, 75.3%). The principal findings were as follows: (1) >60 unique terms were used to define user engagement; ?use? (102/292, 34.9%) and ?engagement? (94/292, 32.2%) were the most common; (2) a total of 11 distinct user engagement measurement approaches were identified; the use of objective user log-in data from an app or web portal (160/292, 54.8%) was the most common; (3) although engagement was inconsistently evaluated, most of the studies (99/195, 50.8%) reported >1 level of engagement due to the use of multiple measurement methods or analyses, decreased engagement across time (76/99, 77%), and results and conclusions suggesting that higher engagement was associated with positive adherence or self-management (60/103, 58.3%); and (4) user engagement was a research end point in only 19.2% (56/292) of the studies. Conclusions: The results revealed major limitations in the literature reviewed, including significant variability in how user engagement is defined, a tendency to rely on user log-in data over other measurements, and critical gaps in how user engagement is evaluated (infrequently evaluated over time or in relation to adherence or self-management outcomes and rarely considered a research end point). Recommendations are outlined in response to our findings with the goal of improving research rigor in this area. Trial Registration: PROSPERO International Prospective Register of Systematic Reviews CRD42022289693; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022289693 UR - https://www.jmir.org/2024/1/e50508 UR - http://dx.doi.org/10.2196/50508 UR - http://www.ncbi.nlm.nih.gov/pubmed/39316431 ID - info:doi/10.2196/50508 ER - TY - JOUR AU - Al-Adili, Lina AU - Malmqvist, Moa AU - Reinius, Maria AU - Helispää Rodriguez, Inka AU - Stenfors, Terese AU - Brommels, Mats PY - 2024/9/12 TI - Implementation of a Recovery College Embedded in a Swedish Psychiatry Organization: Qualitative Case Study JO - J Particip Med SP - e55882 VL - 16 KW - mental health KW - educational intervention KW - recovery college KW - implementation research approach KW - qualitative research KW - coproduction N2 - Background: Recovery colleges are service user?led educational interventions aiming at empowering people with mental health issues and promoting recovery through peer learning. Despite the increasing interest in recovery colleges in recent years and the demonstrated beneficial effects for users, there is limited research addressing aspects that influence their implementation. This knowledge is necessary for the successful integration of such interventions in various contexts. Objective: This study aims to explore factors that influence the implementation of a recovery college embedded within a Swedish psychiatry organization. Methods: A qualitative case study of a recovery college based on semistructured interviews with 8 course participants, 4 course leaders, and 4 clinical staff was conducted. The transcripts were scrutinized with conventional content analysis, and the interpretation of results was guided by the Consolidated Framework for Implementation Research. Results: The findings highlight key areas that either hinder or promote the successful implementation of the recovery college. These areas included recruitment, resources, staff attitudes, and ways of organizing courses. Each area has elements that appear both as facilitators and barriers, demonstrating the duality of conditions. Conclusions: Allocating dedicated resources, engaging individuals with service user experience as organizers who are willing to share their personal experience, having an open-door policy, creating an open space for participants to share their experiences, and offering practical advice and written material are useful to create favorable conditions for a recovery college to reach its goals of empowering psychiatry service users. UR - https://jopm.jmir.org/2024/1/e55882 UR - http://dx.doi.org/10.2196/55882 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/55882 ER - TY - JOUR AU - Tak, Won Yae AU - Lee, Won Jong AU - Kim, Junetae AU - Lee, Yura PY - 2024/9/9 TI - Predicting Long-Term Engagement in mHealth Apps: Comparative Study of Engagement Indices JO - J Med Internet Res SP - e59444 VL - 26 KW - treatment adherence and compliance KW - patient compliance KW - medication adherence KW - digital therapeutics KW - engagement index KW - mobile phone N2 - Background: Digital health care apps, including digital therapeutics, have the potential to increase accessibility and improve patient engagement by overcoming the limitations of traditional facility-based medical treatments. However, there are no established tools capable of quantitatively measuring long-term engagement at present. Objective: This study aimed to evaluate an existing engagement index (EI) in a commercial health management app for long-term use and compare it with a newly developed EI. Methods: Participants were recruited from cancer survivors enrolled in a randomized controlled trial that evaluated the impact of mobile health apps on recovery. Of these patients, 240 were included in the study and randomly assigned to the Noom app (Noom Inc). The newly developed EI was compared with the existing EI, and a long-term use analysis was conducted. Furthermore, the new EI was evaluated based on adapted measurements from the Web Matrix Visitor Index, focusing on click depth, recency, and loyalty indices. Results: The newly developed EI model outperformed the existing EI model in terms of predicting EI of a 6- to 9-month period based on the EI of a 3- to 6-month period. The existing model had a mean squared error of 0.096, a root mean squared error of 0.310, and an R2 of 0.053. Meanwhile, the newly developed EI models showed improved performance, with the best one achieving a mean squared error of 0.025, root mean squared error of 0.157, and R2 of 0.610. The existing EI exhibited significant associations: the click depth index (hazard ratio [HR] 0.49, 95% CI 0.29-0.84; P<.001) and loyalty index (HR 0.17, 95% CI 0.09-0.31; P<.001) were significantly associated with improved survival, whereas the recency index exhibited no significant association (HR 1.30, 95% CI 1.70-2.42; P=.41). Among the new EI models, the EI with a menu combination of menus available in the app?s free version yielded the most promising result. Furthermore, it exhibited significant associations with the loyalty index (HR 0.32, 95% CI 0.16-0.62; P<.001) and the recency index (HR 0.47, 95% CI 0.30-0.75; P<.001). Conclusions: The newly developed EI model outperformed the existing model in terms of the prediction of long-term user engagement and compliance in a mobile health app context. We emphasized the importance of log data and suggested avenues for future research to address the subjectivity of the EI and incorporate a broader range of indices for comprehensive evaluation. UR - https://www.jmir.org/2024/1/e59444 UR - http://dx.doi.org/10.2196/59444 UR - http://www.ncbi.nlm.nih.gov/pubmed/39250192 ID - info:doi/10.2196/59444 ER - TY - JOUR AU - AbouWarda, Horeya AU - Dolata, Mateusz AU - Schwabe, Gerhard PY - 2024/8/19 TI - How Does an Online Mental Health Community on Twitter Empower Diverse Population Levels and Groups? A Qualitative Analysis of #BipolarClub JO - J Med Internet Res SP - e55965 VL - 26 KW - social media KW - Twitter KW - online mental health community KW - OMHC KW - empowerment processes KW - diverse population levels and groups KW - World Health Organization KW - WHO KW - Integrated People-Centred Health Services KW - IPCHS framework (Strategy 1) N2 - Background: Social media, including online health communities (OHCs), are widely used among both healthy people and those with health conditions. Platforms like Twitter (recently renamed X) have become powerful tools for online mental health communities (OMHCs), enabling users to exchange information, express feelings, and socialize. Recognized as empowering processes, these activities could empower mental health consumers, their families and friends, and society. However, it remains unclear how OMHCs empower diverse population levels and groups. Objective: This study aimed to develop an understanding of how empowerment processes are conducted within OMHCs on Twitter by identifying members who shape these communities, detecting the types of empowerment processes aligned with the population levels and groups outlined in Strategy 1 of the Integrated People-Centred Health Services (IPCHS) framework by the World Health Organization (WHO), and clarifying members? involvement tendencies in these processes. Methods: We conducted our analysis on a Twitter OMHC called #bipolarclub. We captured 2068 original tweets using its hashtag #bipolarclub between December 19, 2022, and January 15, 2023. After screening, 547 eligible tweets by 182 authors were analyzed. Using qualitative content analysis, community members were classified by examining the 182 authors? Twitter profiles, and empowerment processes were identified by analyzing the 547 tweets and categorized according to the WHO?s Strategy 1. Members? tendencies of involvement were examined through their contributions to the identified processes. Results: The analysis of #bipolarclub community members unveiled 5 main classifications among the 182 members, with the majority classified as individual members (n=138, 75.8%), followed by health care?related members (n=39, 21.4%). All members declared that they experience mental health conditions, including mental health and general practitioner members, who used the community as consumers and peers rather than for professional services. The analysis of 547 tweets for empowerment processes revealed 3 categories: individual-level processes (6 processes and 2 subprocesses), informal carer processes (1 process for families and 1 process for friends), and society-level processes (1 process and 2 subprocesses). The analysis also demonstrated distinct involvement tendencies among members, influenced by their identities, with individual members engaging in self-expression and family awareness support and health care?related members supporting societal awareness. Conclusions: The examination of the #bipolarclub community highlights the capability of Twitter-based OMHCs to empower mental health consumers (including those from underserved and marginalized populations), their families and friends, and society, aligning with the WHO?s empowerment agenda. This underscores the potential benefits of leveraging Twitter for such objectives. This pioneering study is the very first to analyze how a single OMHC can empower diverse populations, offering various health care stakeholders valuable guidance and aiding them in developing consumer-oriented empowerment programs using such OMHCs. We also propose a structured framework that classifies empowerment processes in OMHCs, inspired by the WHO?s Strategy 1 (IPCHS framework). UR - https://www.jmir.org/2024/1/e55965 UR - http://dx.doi.org/10.2196/55965 UR - http://www.ncbi.nlm.nih.gov/pubmed/39158945 ID - info:doi/10.2196/55965 ER - TY - JOUR AU - Teodorowski, Piotr AU - Jones, Elisa AU - Tahir, Naheed AU - Ahmed, Saiqa AU - Rodgers, E. Sarah AU - Frith, Lucy PY - 2024/8/16 TI - Public Involvement and Engagement in Big Data Research: Scoping Review JO - J Particip Med SP - e56673 VL - 16 KW - patient and public involvement KW - PPI KW - involvement KW - engagement KW - big data KW - data science KW - patient engagement KW - co-design KW - coproduction N2 - Background: The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research. Objective: This review aims to synthesize the evidence on public involvement and engagement in big data research. Methods: This scoping review mapped the current evidence on public involvement and engagement activities in big data research. We searched 5 electronic databases, followed by additional manual searches of Google Scholar and gray literature. In total, 2 public contributors were involved at all stages of the review. Results: A total of 53 papers were included in the scoping review. The review showed the ways in which the public could be involved and engaged in big data research. The papers discussed a broad range of involvement activities, who could be involved or engaged, and the importance of the context in which public involvement and engagement occur. The findings show how public involvement, engagement, and consultation could be delivered in big data research. Furthermore, the review provides examples of potential outcomes that were produced by involving and engaging the public in big data research. Conclusions: This review provides an overview of the current evidence on public involvement and engagement in big data research. While the evidence is mostly derived from discussion papers, it is still valuable in illustrating how public involvement and engagement in big data research can be implemented and what outcomes they may yield. Further research and evaluation of public involvement and engagement in big data research are needed to better understand how to effectively involve and engage the public in big data research. International Registered Report Identifier (IRRID): RR2-https://doi.org/10.1136/bmjopen-2021-050167 UR - https://jopm.jmir.org/2024/1/e56673 UR - http://dx.doi.org/10.2196/56673 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/56673 ER - TY - JOUR AU - Posner, Jessica AU - Ndhlovu, Paxon Adamson AU - Musangulule, Mushinka Jemmy AU - Duffy, Malia AU - Casella, Amy AU - Madevu-Matson, Caitlin AU - Davis, Nicole AU - Sharer, Melissa PY - 2024/7/23 TI - Evaluating the Preliminary Effectiveness of the Person-Centered Care Assessment Tool (PCC-AT) in Zambian Health Facilities: Protocol for a Mixed Methods Cross-Sectional Study JO - JMIR Res Protoc SP - e54129 VL - 13 KW - person-centered care KW - HIV KW - action plans KW - preliminary KW - person-centered care assessment tool KW - PCC-AT KW - assessment tool KW - Zambia KW - health facility KW - exploratory study KW - HIV treatment KW - inequities KW - framework KW - practitioners KW - health services N2 - Background: Person-centered care (PCC) within HIV treatment services has demonstrated potential to overcome inequities in HIV service access while improving treatment outcomes. Despite PCC being widely considered a best practice, no consensus exists on its assessment and measurement. This study in Zambia builds upon previous research that informed development of a framework for PCC and a PCC assessment tool (PCC-AT). Objective: This mixed methods study aims to examine the preliminary effectiveness of the PCC-AT through assessing the association between client HIV service delivery indicators and facility PCC-AT scores. We hypothesize that facilities with higher PCC-AT scores will demonstrate more favorable HIV treatment continuity, viral load (VL) coverage, and viral suppression in comparison to those of facilities with lower PCC-AT scores. Methods: We will implement the PCC-AT at 30 randomly selected health facilities in the Copperbelt and Central provinces of Zambia. For each study facility, data will be gathered from 3 sources: (1) PCC-AT scores, (2) PCC-AT action plans, and (3) facility characteristics, along with service delivery data. Quantitative analysis, using STATA, will include descriptive statistics on the PCC-AT results stratified by facility characteristics. Cross-tabulations and/or regression analysis will be used to determine associations between scores and treatment continuity, VL coverage, and/or viral suppression. Qualitative data will be collected via action planning, with detailed notes collected and recorded into an action plan template. Descriptive coding and emerging themes will be analyzed with NVivo software. Results: As of May 2024, we enrolled 29 facilities in the study and data analysis from the key informant interviews is currently underway. Results are expected to be published by September 2024. Conclusions: Assessment and measurement of PCC within HIV treatment settings is a novel approach that offers HIV treatment practitioners the opportunity to examine their services and identify actions to improve PCC performance. Study results and the PCC-AT will be broadly disseminated for use among all project sites in Zambia as well as other HIV treatment programs, in addition to making the PCC-AT publicly available to global HIV practitioners. International Registered Report Identifier (IRRID): DERR1-10.2196/54129 UR - https://www.researchprotocols.org/2024/1/e54129 UR - http://dx.doi.org/10.2196/54129 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/54129 ER - TY - JOUR AU - Wang, Yan AU - DeVito Dabbs, Annette AU - Thomas, Hagan Teresa AU - Campbell, Grace AU - Donovan, Heidi PY - 2024/7/22 TI - Measuring Engagement in Provider-Guided Digital Health Interventions With a Conceptual and Analytical Framework Using Nurse WRITE as an Exemplar: Exploratory Study With an Iterative Approach JO - JMIR Form Res SP - e57529 VL - 8 KW - engagement KW - digital health intervention KW - framework KW - symptom management KW - eHealth KW - gynecological cancer N2 - Background: Limited guidance exists for analyzing participant engagement in provider-guided digital health interventions (DHIs). System usage is commonly assessed, with acknowledged limitations in measuring socio-affective and cognitive aspects of engagement. Nurse WRITE, an 8-week web-based nurse-guided DHI for managing symptoms among women with recurrent ovarian cancer, offers an opportunity to develop a framework for assessing multidimensional engagement. Objective: This study aims to develop a conceptual and analytic framework to measure socio-affective, cognitive, and behavioral engagement with provider-guided DHIs. We then illustrate the framework?s ability to describe and categorize engagement using Nurse WRITE as an example. Methods: A sample of 68 participants from Nurse WRITE who posted on the message boards were included. We adapted a prior framework for conceptualizing and operationalizing engagement across 3 dimensions and finalized a set of 6 distinct measures. Using patients' posts, we created 2 socio-affective engagement measures?total count of socio-affective engagement classes (eg, sharing personal experience) and total word count?and 2 cognitive engagement measures?total count of cognitive engagement classes (eg, asking information-seeking questions) and average question completion percentage. Additionally, we devised behavioral engagement measures using website data?the total count of symptom care plans and plan reviews. k-Means clustering categorized the participants into distinct groups based on levels of engagement across 3 dimensions. Descriptive statistics and narratives were used to describe engagement in 3 dimensions. Results: On average, participants displayed socio-affective engagement 34.7 times, writing 14,851 words. They showed cognitive engagement 19.4 times, with an average of 78.3% completion of nurses' inquiries. Participants also submitted an average of 1.6 symptom care plans and 0.7 plan reviews. Participants were clustered into high (n=13), moderate (n=17), and low engagers (n=38) based on the 6 measures. High engagers wrote a median of 36,956 (IQR 26,199-46,265) words. They demonstrated socio-affective engagement approximately 81 times and cognitive engagement around 46 times, approximately 6 times that of the low engagers and twice that of the moderate engagers. High engagers had a median of 91.7% (IQR 82.2%-93.7%) completion of the nurses? queries, whereas moderate engagers had 86.4% (IQR 80%-96.4%), and low engagers had 68.3% (IQR 60.1%-79.6%). High engagers completed a median of 3 symptom care plans and 2 reviews, while moderate engagers completed 2 plans and 1 review. Low engagers completed a median of 1 plan with no reviews. Conclusions: This study developed and reported an engagement framework to guide behavioral intervention scientists in understanding and analyzing participants? engagement with provider-guided DHIs. Significant variations in engagement levels across 3 dimensions highlight the importance of measuring engagement with provider-guided DHIs in socio-affective, cognitive, and behavioral dimensions. Future studies should validate the framework with other DHIs, explore the influence of patient and provider factors on engagement, and investigate how engagement influences intervention efficacy. UR - https://formative.jmir.org/2024/1/e57529 UR - http://dx.doi.org/10.2196/57529 UR - http://www.ncbi.nlm.nih.gov/pubmed/39037757 ID - info:doi/10.2196/57529 ER - TY - JOUR AU - Chalker, A. Samantha AU - Serafez, Jesus AU - Imai, Yuki AU - Stinchcomb, Jeffrey AU - Mendez, Estefany AU - Depp, A. Colin AU - Twamley, W. Elizabeth AU - Fortuna, L. Karen AU - Goodman, Marianne AU - Chinman, Matthew PY - 2024/5/23 TI - Suicide Prevention by Peers Offering Recovery Tactics (SUPPORT) for US Veterans With Serious Mental Illness: Community Engagement Approach JO - J Particip Med SP - e56204 VL - 16 KW - suicide prevention KW - advisor KW - veterans KW - recovery KW - community KW - peer specialist KW - peer support KW - serious mental illness KW - participatory design KW - community engagement KW - lived experience N2 - Background: Peer specialists are hired, trained, and accredited to share their lived experience of psychiatric illness to support other similar individuals through the recovery process. There are limited data on the role of peer specialists in suicide prevention, including their role in intervention development. Objective: To better understand peer specialists within the Veterans Health Administration (VHA), we followed partnership community engagement and a formative research approach to intervention development to (1) identify barriers, facilitators, and perceptions of VHA peer specialists delivering a suicide prevention service and (2) develop and refine an intervention curriculum based on an evidence-informed preliminary intervention framework for veterans with serious mental illness (SMI). Methods: Following the community engagement approach, VHA local and national peer support and mental health leaders, veterans with SMI, and veteran peer specialists met to develop a preliminary intervention framework. Next, VHA peer specialist advisors (n=5) and scientific advisors (n=6) participated in respective advisory boards and met every 2-4 months for more than 18 months via videoconferencing to address study objectives. The process used was a reflexive thematic analysis after each advisory board meeting. Results: The themes discussed included (1) the desire for suicide prevention training for peer specialists, (2) determining the role of VHA peer specialists in suicide prevention, (3) integration of recovery themes in suicide prevention, and (4) difficulties using safety plans during a crisis. There were no discrepancies in thematic content between advisory boards. Advisor input led to the development of Suicide Prevention by Peers Offering Recovery Tactics (SUPPORT). SUPPORT includes training in general suicide prevention and a peer specialist?delivered intervention for veterans with SMI at an increased suicide risk. This training aims to increase the competence and confidence of peer specialists in suicide prevention and the intervention supports veterans with SMI at an increased suicide risk through their recovery process. Conclusions: This paper intends to document the procedures taken in suicide prevention intervention development, specifically those led by peer specialists, and to be a source for future research developing and evaluating similar interventions. Trial Registration: ClinicalTrials.gov NCT05537376; https://classic.clinicaltrials.gov/ct2/show/NCT05537376 UR - https://jopm.jmir.org/2024/1/e56204 UR - http://dx.doi.org/10.2196/56204 UR - http://www.ncbi.nlm.nih.gov/pubmed/38781010 ID - info:doi/10.2196/56204 ER - TY - JOUR AU - de Weger, Esther AU - Drewes, Hanneke AU - Luijkx, Katrien AU - Baan, Caroline PY - 2024/5/15 TI - Tracking the Development of Community Engagement Over Time: Realist Qualitative Study JO - J Particip Med SP - e47500 VL - 16 KW - community engagement KW - citizen involvement KW - health care KW - decentralization KW - realist evaluation N2 - Background: A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers. Objective: To bridge the gap between the evidence base and which community engagement (CE) approaches have actually been applied in practice over time, this study aims to investigate how CE approaches have changed over the past 4 years in 6 different regions in the Netherlands and citizens? and professionals? experiences underlying these changes. Methods: For the last stage of a multiple case study following the development of CE approaches in 6 different regions in the Netherlands, a realist qualitative case study was conducted. To investigate how CE approaches had changed over the past 4 years, data from the entire 4 years of the study were used, including documents, interview transcripts, and observations. To examine citizens? and professionals? experiences underlying these changes, new interviews were conducted. The latest interview results were discussed with a panel to ensure the results had face validity. Results: The regions had implemented different types of CE approaches over the past 4 years and were adapting these approaches over time. Many of the (remaining) approaches may be operating on a smaller scale. The study identified the following overarching themes along which CE had been adapted: fewer region-wide approaches and more community-focused approaches, more focus on building relationships with (already engaged) citizens and community-led initiatives, and more focus on practical and tangible health promotion and social cohesion activities and less focus on complex ?abstract? programs. The study identified a further 4 overarching themes highlighting citizens? and professionals? experiences underlying these changes in the CE approaches: a lack of engagement environment, need for facilitative leadership from organizations, need for a clear and shared vision underscoring the importance of CE, and misalignment between citizens? and professionals? perspectives and motivations for CE. All participants had experienced the engagement environment as insufficient. To support CE, professionals experienced the need to develop and receive more facilitative leadership and to develop approaches better equipped to involve citizens in the decision-making process. Citizens experienced the need to better align citizens? and professionals? motivations and aims for CE approaches and to receive longer-term financial support for their community-led initiatives. Conclusions: This study suggests that CE has not yet been embedded within organizational cultures. This has arguably meant that the (remaining) CE approaches are operating on a smaller scale. To enable the further development of CE approaches, an investment in the engagement environment and a shared vision is required. Only then could CE within the regions move beyond the more seemingly smaller-scale CE approaches. UR - https://jopm.jmir.org/2024/1/e47500 UR - http://dx.doi.org/10.2196/47500 UR - http://www.ncbi.nlm.nih.gov/pubmed/38748458 ID - info:doi/10.2196/47500 ER - TY - JOUR AU - Ntiamoah, Mabel AU - Xavier, Teenu AU - Lambert, Joshua PY - 2024/4/1 TI - Sentiment Analysis of Patient- and Family-Related Sepsis Events: Exploratory Study JO - JMIR Nursing SP - e51720 VL - 7 KW - families KW - patients KW - sentiment analysis KW - sepsis N2 - Background: Despite the life-threatening nature of sepsis, little is known about the emotional experiences of patients and their families during sepsis events. We conducted a sentiment analysis pertaining to sepsis incidents involving patients and families, leveraging textual data retrieved from a publicly available blog post disseminated by the Centers for Disease Control and Prevention (CDC). Objective: This investigation involved a sentiment analysis of patient- and family-related sepsis events, leveraging text responses sourced from a publicly accessible blog post disseminated by the CDC. Driven by the imperative to elucidate the emotional dynamics encountered by patients and their families throughout sepsis incidents, the overarching aims centered on elucidating the emotional ramifications of sepsis on both patients and their families and discerning potential avenues for enhancing the quality of sepsis care. Methods: The research used a cross-sectional data mining methodology to investigate the sentiments and emotional aspects linked to sepsis, using a data set sourced from the CDC, which encompasses 170 responses from both patients and caregivers, spanning the period between September 2014 and September 2020. This investigation used the National Research Council Canada Emotion Lexicon for sentiment analysis, coupled with a combination of manual and automated techniques to extract salient features from textual responses. The study used negative binomial least absolute shrinkage and selection operator regressions to ascertain significant textual features that correlated with specific emotional states. Moreover, the visualization of Plutchik?s Wheel of Emotions facilitated the discernment of prevailing emotions within the data set. Results: The results showed that patients and their families experienced a range of emotions during sepsis events, including fear, anxiety, sadness, and gratitude. Our analyses revealed an estimated incidence rate ratio (IRR) of 1.35 for fear-related words and a 1.51 IRR for sadness-related words when mentioning ?hospital? in sepsis-related experiences. Similarly, mentions of ?intensive care unit? were associated with an average occurrence of 12.3 fear-related words and 10.8 sadness-related words. Surviving patients? experiences had an estimated 1.15 IRR for joy-related words, contrasting with discussions around organ failure, which were associated with multiple negative emotions including disgust, anger, fear, and sadness. Furthermore, mentions of ?death? were linked to more fear and anger words but fewer joy-related words. Conversely, longer timelines in sepsis events were associated with more joy-related words and fewer fear-related words, potentially indicating improved emotional adaptation over time. Conclusions: The study?s outcomes underscore the imperative for health care providers to integrate emotional support alongside medical interventions for patients and families affected by sepsis, emphasizing the emotional toll incurred and highlighting the necessity of acknowledgment and resolution, advocating for the use of sentiment analysis as a means to tailor personalized emotional aid, and thereby potentially augmenting both patient and family welfare and overall outcomes. UR - https://nursing.jmir.org/2024/1/e51720 UR - http://dx.doi.org/10.2196/51720 UR - http://www.ncbi.nlm.nih.gov/pubmed/38557694 ID - info:doi/10.2196/51720 ER - TY - JOUR AU - Bergers, HK Juno AU - Wessels-Wynia, Hester AU - Seute, Tatjana AU - Janssens, Astrid AU - van Delden, JM Johannes PY - 2024/3/4 TI - Getting to Know Your Patient: Content Analysis of Patients? Answers to a Questionnaire for Promoting Person-Centered Care JO - J Particip Med SP - e48573 VL - 16 KW - person-centered care KW - shared decision-making KW - patient engagement KW - positive health N2 - Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (?We would like to know you?) consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement. Objective: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. Methods: We conducted a qualitative, retrospective content analysis of patients? answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital. Results: Of 374 invited patients, 78 (20.9%) completed the questionnaire. We selected a sample of 42 (54%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process. Conclusions: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC. UR - https://jopm.jmir.org/2024/1/e48573 UR - http://dx.doi.org/10.2196/48573 UR - http://www.ncbi.nlm.nih.gov/pubmed/38437017 ID - info:doi/10.2196/48573 ER - TY - JOUR AU - Quintal, Ariane AU - Carreau, Isabelle AU - Grenier, Annie-Danielle AU - Hébert, Caroline AU - Yergeau, Christine AU - Berthiaume, Yves AU - Racine, Eric PY - 2023/11/23 TI - An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach JO - J Particip Med SP - e46607 VL - 15 KW - community-based participatory research KW - rare diseases KW - bioethics KW - delivery of health care KW - ethics KW - clinical KW - patient participation KW - empowerment KW - education KW - medical KW - attitude of health personnel KW - patient education as topic KW - patient partnership N2 - Background: Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations. Objective: This paper presents an ethical action plan for rare disease care and the process underlying its development. Methods: This action plan was designed through an ethical inquiry conducted by the Ethics and Rare Diseases Working Group, which included 3 patient partners, 2 clinician researchers, and 1 representative from Québec?s rare disease association. Results: The plan is structured into 4 components. Component A presents the key moral challenges encountered by patients, which are the lack of knowledge on rare diseases among health care workers, the problematic attitudes that it sometimes elicits, and the distress and powerlessness experienced by patients. Component B emphasizes a vision for patient partnership in rare disease care characterized by open-mindedness, empathy, respect, and support of patient autonomy from health care workers. Component C outlines 2 courses of action prompted by this vision: raising awareness among health care workers and empowering patients to better navigate their care. Component D compares several interventions that could help integrate these 2 courses of action in rare disease care. Conclusions: Overall, this action plan represents a toolbox that provides a review of multiple possible interventions for policy makers, hospital managers, practitioners, researchers, and patient associations to critically reflect on key moral challenges experienced by patients with rare diseases and ways to mitigate them. This paper also prompts reflection on the values underlying rare disease care, patient experiences, and health care workers? beliefs and behaviors. Health care workers and patients were the primary beneficiaries of this action plan. UR - https://jopm.jmir.org/2023/1/e46607 UR - http://dx.doi.org/10.2196/46607 UR - http://www.ncbi.nlm.nih.gov/pubmed/37995128 ID - info:doi/10.2196/46607 ER - TY - JOUR AU - Kerber, André AU - Beintner, Ina AU - Burchert, Sebastian AU - Knaevelsrud, Christine PY - 2023/11/6 TI - Effects of a Self-Guided Transdiagnostic Smartphone App on Patient Empowerment and Mental Health: Randomized Controlled Trial JO - JMIR Ment Health SP - e45068 VL - 10 KW - patient empowerment KW - mental health?related self-management skills KW - help-seeking attitude KW - mental health literacy KW - internet-based interventions KW - unguided KW - self-guided KW - transdiagnostic mental health app N2 - Background: Mental disorders impact both individuals and health systems. Symptoms and syndromes often remain undetected and untreated, resulting in chronification. Besides limited health care resources, within-person barriers such as the lack of trust in professionals, the fear of stigmatization, or the desire to cope with problems without professional help contribute to the treatment gap. Self-guided mental health apps may support treatment seeking by reducing within-person barriers and facilitating mental health literacy. Digital mental health interventions may also improve mental health related self-management skills and contribute to symptom reduction and the improvement of quality of life. Objective: This study aims to investigate the effects of a self-guided transdiagnostic app for mental health on help seeking, reduced stigma, mental health literacy, self-management skills, mental health symptoms, and quality of life using a randomized controlled design. Methods: Overall, 1045 participants (recruited via open, blinded, and web-based recruitment) with mild to moderate depression or anxiety-, sleep-, eating-, or somatization-related psychopathology were randomized to receive either access to a self-guided transdiagnostic mental health app (MindDoc) in addition to care as usual or care as usual only. The core features of the app were regular self-monitoring, automated feedback, and psychological courses and exercises. The coprimary outcomes were mental health literacy, mental health?related patient empowerment and self-management skills (MHPSS), attitudes toward help seeking, and actual mental health service use. The secondary outcomes were psychopathological symptom burden and quality of life. Data were collected at baseline and 8 weeks and 6 months after randomization. Treatment effects were investigated using analyses of covariance, including baseline variables as predictors and applying multiple imputation. Results: We found small but robust between-group effects for MHPSS (Cohen d=0.29), symptoms burden (Cohen d=0.28), and quality of life (Cohen d=0.19) 8 weeks after randomization. The effects on MHPSS were maintained at follow-up. Follow-up assessments also showed robust effects on mental health literacy and preliminary evidence for the improvement of help seeking. Predictors of attrition were lower age and higher personality dysfunction. Among the non-attritors, predictors for deterioration were less outpatient treatment and higher initial symptom severity. Conclusions: A self-guided transdiagnostic mental health app can contribute to lasting improvements in patient empowerment. Symptoms of common mental disorders and quality of life improved faster in the intervention group than in the control group. Therefore, such interventions may support individuals with symptoms of 1 or more internalizing disorders, develop health-centered coping skills, prevent chronification, and accelerate symptom improvement. Although the effects for individual users are small and predictors of attrition and deterioration need to be investigated further, the potential public health impact of a self-guided intervention can be large, given its high scalability. Trial Registration: German Clinical Trials Register DRKS00022531; https://drks.de/search/de/trial/DRKS00022531 UR - https://mental.jmir.org/2023/1/e45068 UR - http://dx.doi.org/10.2196/45068 UR - http://www.ncbi.nlm.nih.gov/pubmed/37930749 ID - info:doi/10.2196/45068 ER - TY - JOUR AU - Scott Duncan, Therese AU - Engström, Jon AU - Riggare, Sara AU - Hägglund, Maria AU - Koch, Sabine PY - 2022/11/16 TI - Meeting the Burden of Self-management: Qualitative Study Investigating the Empowering Behaviors of Patients and Informal Caregivers JO - J Particip Med SP - e39174 VL - 14 IS - 1 KW - behaviors KW - chronic conditions KW - model of illness-related work KW - empowerment KW - self-management N2 - Background: Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce. Objective: We aimed to explore empowering behaviors from a patient and informal caregiver perspective in the context of self-management and to understand how health care can support such behaviors better. Methods: We used an exploratory, qualitative study design. A total of 15 semistructured interviews and 6 focus group interviews were conducted with 48 patients and informal caregivers. We analyzed the interviews using thematic analysis and used a directed content analysis to analyze the focus group interviews. Results: A total of 14 patterns of empowering behaviors were identified that were characterized by several exploratory and influencing activities performed by the participants. The participants expressed a desire to be more active in their care than what is expected and supported by health care professionals. The participants also desired better support for activities imposed on them by health care professionals. Conclusions: To enable a transformation of the health care system to better support self-empowering behaviors, there is a need to develop self-management approaches from a patient and informal caregiver perspective. UR - https://jopm.jmir.org/2022/1/e39174 UR - http://dx.doi.org/10.2196/39174 UR - http://www.ncbi.nlm.nih.gov/pubmed/36383418 ID - info:doi/10.2196/39174 ER - TY - JOUR AU - Bouras, Adam AU - Simoes, J. Eduardo AU - Boren, Suzanne AU - Hicks, Lanis AU - Zachary, Iris AU - Buck, Christoph AU - Dhingra, Satvinder AU - Ellis, Richard PY - 2020/5/15 TI - Non-Hispanic White Mothers? Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel JO - J Participat Med SP - e14062 VL - 12 IS - 2 KW - surveys and questionnaires KW - confidentiality KW - electronic health records KW - fitness trackers KW - mobile applications KW - logistic models N2 - Background: Advances in information communication technology provide researchers with the opportunity to access and collect continuous and granular data from enrolled participants. However, recruiting study participants who are willing to disclose their health data has been challenging for researchers. These challenges can be related to socioeconomic status, the source of data, and privacy concerns about sharing health information, which affect data-sharing behaviors. Objective: This study aimed to assess healthy non-Hispanic white mothers? attitudes in five areas: motivation to share data, concern with data use, desire to keep health information anonymous, use of patient portal and willingness to share anonymous data with researchers. Methods: This cross-sectional study was conducted on 622 healthy non-Hispanic white mothers raising healthy children. From a Web-based survey with 51 questions, we selected 15 questions for further analysis. These questions focused on attitudes and beliefs toward data sharing, internet use, interest in future research, and sociodemographic and health questions about mothers and their children. Data analysis was performed using multivariate logistic regressions to investigate the factors that influence mothers? willingness to share their personal health data, their utilization of a patient portal, and their interests in keeping their health information anonymous. Results: The results of the study showed that the majority of mothers surveyed wanted to keep their data anonymous (440/622, 70.7%) and use patient portals (394/622, 63.3%) and were willing to share their data from Web-based surveys (509/622, 81.8%) and from mobile phones (423/622, 68.0%). However, 36.0% (224/622) and 40.5% (252/622) of mothers were less willing to share their medical record data and their locations with researchers, respectively. We found that the utilization of patient portals, their attitude toward keeping data anonymous, and their willingness to share different data sources were dependent on the mothers? health care provider status, their motivation, and their privacy concerns. Mothers? concerns about the misuse of personal health information had a negative impact on their willingness to share sensitive data (ie, electronic medical record: adjusted odds ratio [aOR] 0.43, 95% CI 0.25-0.73; GPS: aOR 0.4, 95% CI 0.27-0.60). In contrast, mothers? motivation to share their data had a positive impact on disclosing their data via Web-based surveys (aOR 5.94, 95% CI 3.15-11.2), apps and devices designed for health (aOR 5.3, 95% CI 2.32-12.1), and a patient portal (aOR 4.3, 95% CI 2.06-8.99). Conclusions: The findings of this study suggest that mothers? privacy concerns affect their decisions to share sensitive data. However, mothers? access to the internet and the utilization of patient portals did not have a significant effect on their willingness to disclose their medical record data. Finally, researchers can use our findings to better address their study subjects concerns and gain their subjects trust to disclose data. UR - http://jopm.jmir.org/2020/2/e14062/ UR - http://dx.doi.org/10.2196/14062 UR - http://www.ncbi.nlm.nih.gov/pubmed/33064096 ID - info:doi/10.2196/14062 ER - TY - JOUR AU - Primholdt Christensen, Nina AU - Danbjørg, Boe Dorthe PY - 2018/12/19 TI - Use of Video Consultations for Patients With Hematological Diseases From a Patient Perspective: Qualitative Study JO - J Participat Med SP - e11089 VL - 10 IS - 4 KW - consultations KW - telehealth KW - technology KW - patient KW - hematology N2 - Background: The need for the use of telemedicine is expected to increase in the coming years. There is, furthermore, a lack of evidence about the use of video consultations for hematological patients, and how the use of video consultations is experienced from the patients? perspective. Objective: This study aimed to identify patients? experiences with the use of video consultations in place of face-to-face consultations, what it means to the patient to save the travel time, and how the roles between patients and health care professionals are experienced when using video consultation. This study concerns stable, not acutely ill, patients with hematological disease. Methods: The study was designed as an exploratory and qualitative study. Data were collected through participant observations and semistructured interviews and analyzed in a postphenomenological framework. Results: The data analysis revealed three categories: ?Intimacy is not about physical presence,? ?Handling technology,? and ?Technology increases the freedom that the patients desire.? Conclusions: This study demonstrates what is important for patients with regards to telemedicine and how they felt about seeing health care professionals through a screen. It was found that intimacy can be mediated through a screen and physical presence is not as important to the patient as other things. The study further pointed out how patients valued being involved in the planning of their treatment. The patients also valued the freedom associated with telemedicine and actively took responsibility for their own course of treatment. Patients felt that video consultations allowed them to be free and active, despite their illness. UR - https://jopm.jmir.org/2018/4/e11089/ UR - http://dx.doi.org/10.2196/11089 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/11089 ER - TY - JOUR AU - Hullmann, E. Stephanie AU - Keller, A. Stacy AU - Lynch, O. Dustin AU - Jenkins, Kelli AU - Moore, Courtney AU - Cockrum, Brandon AU - Wiehe, E. Sarah AU - Carroll, E. Aaron AU - Bennett Jr, E. William PY - 2018/09/10 TI - Phase I of the Detecting and Evaluating Childhood Anxiety and Depression Effectively in Subspecialties (DECADES) Study: Development of an Integrated Mental Health Care Model for Pediatric Gastroenterology JO - J Participat Med SP - e10655 VL - 10 IS - 3 KW - qualitative research KW - patient-reported outcomes KW - depression KW - anxiety N2 - Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential for effective treatment of a wide variety of functional gastrointestinal disorders. Objective: The objective of our study was to determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: We augmented standard qualitative group session methods with patient-centered design methods to assess patient and parent preferences. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. Results: Overall, 11 families (11 patients and 14 parents) participated in 2 group sessions. Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients? primary concerns were for the privacy and confidentiality of their screening results. Patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office. UR - http://jopm.jmir.org/2018/3/e10655/ UR - http://dx.doi.org/10.2196/10655 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/10655 ER - TY - JOUR AU - Myneni, Sahiti AU - Sridharan, Vishnupriya AU - Cobb, Nathan AU - Cohen, Trevor PY - 2018/07/24 TI - Content-Sensitive Characterization of Peer Interactions of Highly Engaged Users in an Online Community for Smoking Cessation: Mixed-Methods Approach for Modeling User Engagement in Health Promotion Interventions JO - J Participat Med SP - e9 VL - 10 IS - 3 KW - user engagement KW - smoking cessation KW - text analysis N2 - Background: Online communities provide affordable venues for behavior change. However, active user engagement holds the key to the success of these platforms. In order to enhance user engagement and in turn, health outcomes, it is essential to offer targeted interventional and informational support. Objective: In this paper, we describe a content plus frequency framework to enable the characterization of highly engaged users in online communities and study theoretical techniques employed by these users through analysis of exchanged communication. Methods: We applied the proposed methodology for analysis of peer interactions within QuitNet, an online community for smoking cessation. Firstly, we identified 144 highly engaged users based on communication frequency within QuitNet over a period of 16 years. Secondly, we used the taxonomy of behavior change techniques, text analysis methods from distributional semantics, machine learning, and sentiment analysis to assign theory-driven labels to content. Finally, we extracted content-specific insights from peer interactions (n=159,483 messages) among highly engaged QuitNet users. Results: Studying user engagement using our proposed framework led to the definition of 3 user categories?conversation initiators, conversation attractors, and frequent posters. Specific behavior change techniques employed by top tier users (threshold set at top 3) within these 3 user groups were found to be goal setting, social support, rewards and threat, and comparison of outcomes. Engagement-specific trends within sentiment manifestations were also identified. Conclusions: Use of content-inclusive analytics has offered deep insight into specific behavior change techniques employed by highly engaged users within QuitNet. Implications for personalization and active user engagement are discussed. UR - http://jopm.jmir.org/2018/3/e9/ UR - http://dx.doi.org/10.2196/jopm.9745 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.9745 ER - TY - JOUR AU - Katsanis, Huston Sara AU - Minear, A. Mollie AU - Sadeghpour, Azita AU - Cope, Heidi AU - Perilla, Yezmin AU - Cook-Deegan, Robert AU - AU - Katsanis, Nicholas AU - Davis, E. Erica AU - Angrist, Misha PY - 2018/01/30 TI - Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions JO - J Participat Med SP - e2 VL - 10 IS - 1 KW - partnership KW - exome sequencing KW - genome sequencing KW - return of results KW - participant engagement N2 - Background: Unlike aggregate research on groups of participants with a particular disorder, genomic research on discrete families? rare conditions could result in data of use to families, their healthcare, as well as generating knowledge on the human genome. Objective: In a study of families seeking to rule in/out genetic causes for their children?s medical conditions via exome sequencing, we solicited their views on the importance of genomic information. Our aim was to learn the interests of parents in seeking genomic research data and to gauge their responsiveness and engagement with the research team. Methods: At enrollment, we offered participants options in the consent form for receiving potentially clinically relevant research results. We also offered an option of being a ?partner? versus a ?traditional? participant; partners could be re-contacted for research and study activities. We invited adult partners to complete a pre-exome survey, attend annual family forums, and participate in other inter-family interaction opportunities. Results: Of the 385 adults enrolled, 79% opted for ?partnership? with the research team. Nearly all (99.2%) participants opted to receive research results pertaining to their children?s primary conditions. A majority indicated the desire to receive additional clinically relevant outside the scope of their children?s conditions (92.7%) and an interest in non-clinically relevant genetic information (82.7%). Conclusions: Most participants chose partnership, including its rights and potential burdens; however, active engagement in study activities remained the exception. Not surprisingly, the overwhelming majority of participants?both partners and traditional?expected to receive all genetic information resulting from the research study. UR - http://jopm.jmir.org/2018/1/e2/ UR - http://dx.doi.org/10.2196/jopm.8958 UR - http://www.ncbi.nlm.nih.gov/pubmed/ ID - info:doi/10.2196/jopm.8958 ER - TY - JOUR AU - Belkora, K. Jeffrey AU - Naguit, Marijoyce AU - Stupar, Lauren AU - Wiley, James AU - Volz, Shelley AU - O'Donnell, Sara PY - 2017/8/22 TI - The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved Setting JO - J Participat Med SP - e15 VL - 9 IS - 1 KW - Visit preparation KW - self-efficacy KW - anxiety KW - question list KW - patient support KW - community-based participatory research KW - psycho-oncology. N2 - Background: A community-based organization implemented an evidence-based intervention to help rural cancer patients list questions before oncology visits. Objective: Was the question-listing intervention effective in reducing anxiety and increasing decision self-efficacy? Methods: The organization surveyed patients on decision self-efficacy (273 respondents, 99% response rate) and anxiety (190, 68%) before and after question-listing interventions delivered from 2006 ? 2011. We analyzed responses using two-sided paired t-tests at 5% significance and conducted linear regression to identify significant predictors of change. We examined predictors related to the patient (location, demographics, disease status and baseline decision self-efficacy and anxiety); the intervention (including interventionist case volume); and the visit (including type of doctor seen). Results: Question-listing was associated with higher mean decision self-efficacy (2.70/3.43 pre/post, 1-4 min-max, P<.001) and lower mean anxiety (7.26/5.87, 1-10 min-max, P<.001). Significant predictors of change in decision self-efficacy included: patient location; interventionist case volume; baseline decision self-efficacy and anxiety. Higher baseline anxiety was also associated with reductions in anxiety. Conclusions: In a sustained community-based implementation, the intervention helped patients prepare for oncology visits. Patients reported higher self-efficacy and lower anxiety. UR - http://jopm.jmir.org/2017/1/e15/ UR - http://dx.doi.org/10.2196/jopm.8949 UR - http://www.ncbi.nlm.nih.gov/pubmed/36262006 ID - info:doi/10.2196/jopm.8949 ER -