https://jopm.jmir.org/issue/feedJournal of Participatory Medicine2023-01-10T09:45:04-05:00Susan Woodsjopm-editor@jmir.orgOpen Journal Systems Unless stated otherwise, all articles are open-access distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/)(cc-by), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work ("first published in the Journal of Participatory Medicine") is properly cited with original URL and bibliographic citation information. The complete bibliographic information, a link to the original publication on http://jopm.jmir.org/, as well as this copyright and license information must be included. Co-production in research and healthcare, technology for patient empowerment and fostering partnership with clinicians. https://jopm.jmir.org/2024/1/e50242/ Patients’ Perspectives on Plans Generated During Primary Care Visits and Self-Reported Adherence at 3 Months: Data From a Randomized Trial2024-03-14T09:30:04-04:00Cheryl D StultsKathleen M MazorMichael CheungBernice RuoMartina LiAmanda WalkerCassandra SaphirakFlorin VaidaSonal SinghKimberly A FisherRebecca RosenRobert YoodLawrence GarberChristopher LonghurstGene KallenbergEdward YuAlbert ChanMarlene MillenMing Tai-Seale<strong>Background:</strong> Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence. <strong>Objective:</strong> This study sought to understand patients’ views on their primary care visits, the plans generated therein, and their self-reported adherence after 3 months. <strong>Methods:</strong> As part of a large multisite cluster randomized pragmatic trial in 3 health care organizations, patients completed 2 surveys—the first within 7 days after the index primary care visit and another 3 months later. For this analysis of secondary outcomes, we combined the results across all study participants to understand patient adherence to care plans. We recorded patient characteristics and survey responses. Cross-tabulation and chi-square statistics were used to examine bivariate associations, adjusting for multiple comparisons when appropriate. We used multivariable logistic regression to assess how patients’ intention to follow, agreement, and understanding of their plans impacted their plan adherence, allowing for differences in individual characteristics. Qualitative content analysis was conducted to characterize the patient’s self-reported plans and reasons for adhering (or not) to the plan 3 months later. <strong>Results:</strong> Of 2555 patients, most selected the top box option (9=definitely agree) that they felt they had a clear plan (n=2011, 78%), agreed with the plan (n=2049, 80%), and intended to follow the plan (n=2108, 83%) discussed with their provider at the primary care visit. The most common elements of the plans reported included reference to exercise (n=359, 14.1%), testing (laboratory, imaging, etc; n=328, 12.8%), diet (n=296, 11.6%), and initiation or adjustment of medications; (n=284, 11.1%). Patients who strongly agreed that they had a clear plan, agreed with the plan, and intended to follow the plan were all more likely to report plan completion 3 months later (<i>P</i><.001) than those providing less positive ratings. Patients who reported plans related to following up with the primary care provider (<i>P</i>=.008) to initiate or adjust medications (<i>P</i>≤.001) and to have a specialist visit were more likely to report that they had completely followed the plan (<i>P</i>=.003). Adjusting for demographic variables, patients who indicated intent to follow their plan were more likely to follow-through 3 months later (<i>P</i><.001). Patients’ reasons for completely following the plan were mainly that the plan was clear (n=1114, 69.5%), consistent with what mattered (n=1060, 66.1%), and they were determined to carry through with the plan (n=887, 53.3%). The most common reasons for <i>not</i> following the plan were lack of time (n=217, 22.8%), having decided to try a different approach (n=105, 11%), and the COVID-19 pandemic impacted the plan (n=105, 11%). <strong>Conclusions:</strong> Patients’ initial assessment of their plan as clear, their agreement with the plan, and their initial willingness to follow the plan were all strongly related to their self-reported completion of the plan 3 months later. Patients whose plans involved lifestyle changes were less likely to report that they had “completely” followed their plan. <strong>Trial Registration:</strong> ClinicalTrials.gov NCT03385512; https://clinicaltrials.gov/study/NCT03385512 2024-03-14T09:30:04-04:00 https://jopm.jmir.org/2024/1/e48573/ Getting to Know Your Patient: Content Analysis of Patients’ Answers to a Questionnaire for Promoting Person-Centered Care2024-03-04T09:30:04-05:00Juno HK BergersHester Wessels-WyniaTatjana SeuteAstrid JanssensJohannes JM van Delden<strong>Background:</strong> 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. <strong>Objective:</strong> The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. <strong>Methods:</strong> 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. <strong>Results:</strong> 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. <strong>Conclusions:</strong> 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. 2024-03-04T09:30:04-05:00 https://jopm.jmir.org/2024/1/e48707/ Examining the Feasibility, Acceptability, and Effectiveness of Remote Training on Community-Based Participatory Research: Single-Arm Pre-Post Pilot Study2024-03-01T09:45:04-05:00Karen FortunaAndrew BohmStephanie LebbyKisha HoldenBranka AgicTheodore D CoscoRobert Walker<strong>Background:</strong> Over the past decade, a growing body of scientific evidence has demonstrated that community engagement in research leads to more relevant research, enhances the uptake of research findings, and improves clinical outcomes. Despite the increasing need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master's level competencies in the field of psychiatry often lack dedicated training or coursework on community engagement methodologies. <strong>Objective:</strong> A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. <strong>Methods:</strong> A total of 13 service users, peer support specialists, caregivers of people with mental health challenges, and scientists (with specialties ranging from basic science to implementation science) aged 18 and older participated in remote training on community-based participatory research. Data were collected at baseline, 2 days, and 3 months. <strong>Results:</strong> The pilot study demonstrated that a 3-month remote training on community-based participatory research (“Partnership Academy”) was deemed feasible and acceptable by service users, peer support specialists, caregivers of people with mental health challenges, and scientists. Improvements were found in research engagement and the quality of partnership. A marked increase in distrust in the medical system was also found. Groups submitted 4 grant applications and published 1 peer-reviewed journal at a 3-month follow-up. <strong>Conclusions:</strong> This pre- and postpilot study demonstrated it is possible to train groups of service users, peer support specialists, caregivers of people with mental health challenges, and scientists in community-based participatory research. These findings provide preliminary evidence that a 3-month remote training on community-based participatory research (“Partnership Academy”) is feasible, acceptable, and potentially associated with improvements in research engagement as well as the quality of partnership and output, such as manuscripts and grant applications. 2024-03-01T09:45:04-05:00 https://jopm.jmir.org/2023/1/e54527/ An Extraordinary Voice Expressed Through Humor: A Tribute to Casey Quinlan2023-12-12T09:15:05-05:00Susan S WoodsJan OldenburgDaniel van LeeuwenJane Sarasohn-KahnMatthew F HudsonThe <i>Journal of Participatory Medicine</i> introduces <i>Extraordinary Lives</i>, a new journal section celebrating the voices and work of steadfast advocates of participatory medicine that we have lost. This inaugural essay spotlights Casey Quinlan, a patient activist who effectively used her humor and incisive analysis of health care to encourage others to strive for meaningful change. A first-generation “professional patient,” Casey served as a role model who inspired many to share their stories and achieve genuine partnerships in care delivery. A maker of “good trouble,” her voice and stance were part of her power and influence in disrupting the status quo. We present her fight for personal access to health data, her aspiration for personally customized evidence, and her drive for all people to control their health and their health care.2023-12-12T09:15:05-05:00 https://jopm.jmir.org/2023/1/e46607/ An Ethics Action Plan for Rare Disease Care: Participatory Action Research Approach2023-11-23T09:15:30-05:00Ariane QuintalIsabelle CarreauAnnie-Danielle GrenierCaroline HébertChristine YergeauYves BerthiaumeEric Racine<strong>Background:</strong> 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. <strong>Objective:</strong> This paper presents an ethical action plan for rare disease care and the process underlying its development. <strong>Methods:</strong> This action plan was designed through an ethical inquiry conducted by the <i>Ethics and Rare Diseases Working Group</i>, which included 3 patient partners, 2 clinician researchers, and 1 representative from Québec’s rare disease association. <strong>Results:</strong> 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. <strong>Conclusions:</strong> 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. 2023-11-23T09:15:30-05:00 https://jopm.jmir.org/2023/1/e47550/ Older Adults’ Experiences With Participation and eHealth in Care Coordination: Qualitative Interview Study in a Primary Care Setting2023-10-02T09:00:12-04:00Hilde Marie Hunsbedt FjellsåAnne Marie Lunde HusebøHarald BrautAslaug MikkelsenMarianne Storm<strong>Background:</strong> Owing to the demographic changes in the elderly population worldwide, delivering coordinated care at home to multimorbid older adults is of great importance. Older adults living with multiple chronic conditions need information to manage and coordinate their care. eHealth can be effective for gaining sufficient information, communicating, and self-managing chronic conditions. However, incorporating older adults’ health preferences and ensuring active involvement remain challenging. More knowledge is needed to ensure successful participation and eHealth use in care coordination. <strong>Objective:</strong> This study aimed to explore multimorbid older adults’ experiences with participation and eHealth in care coordination with general practitioners (GPs) and district nurses (DNs). <strong>Methods:</strong> The study had a qualitative explorative approach. Data collection included semistructured interviews with 20 older adults with multimorbidity receiving primary care services from their GPs and DNs. The participants were included by their GPs or nurses at a local intermunicipal acute inpatient care unit. The data analysis was guided by systematic text condensation. <strong>Results:</strong> We identified 2 categories: (1) older adults in charge of and using eHealth in care coordination, and (2) older adults with a loss of control in care coordination. The first category describes how communication with GPs and DNs can facilitate participation, the importance of managing own medication, and how eHealth can support older adults’ information needs. The second category focuses on older adults who depend on guidance and help from their GPs and DNs to manage their health, describing how a lack of capacity and system support to be involved makes these adults lose control of their care coordination. <strong>Conclusions:</strong> Being in charge of care coordination is important for older multimorbid adults. The results show that older adults are willing to use eHealth to be informed and to seek information, which ensures high levels of participation in care coordination. Future research should investigate how older adults can be involved in electronic information sharing with health care providers. 2023-10-02T09:00:12-04:00 https://jopm.jmir.org/2023/1/e47395/ Coproduction of Low-Barrier Hepatitis C Virus and HIV Care for People Who Use Drugs in a Rural Community: Brief Qualitative Report2023-09-20T09:15:18-04:00Shoshana H BardachAmanda N PerryElizabeth EcclesElizabeth A Carpenter-SongRyan FowlerErin M MiersAnais OvalleDavid de Gijsel<strong>Background:</strong> People who inject drugs are experiencing syndemic conditions with increasing risk of infection with hepatitis C (HCV) and HIV. However, rates of accessing HCV and HIV testing and treatment among people who inject drugs are low for various reasons, including the criminalization of drug use, which leads to a focus on treating drug use rather than caring for drug users. For many people who inject drugs, health care becomes a form of structural violence, resulting in traumatic experiences, fear of police violence, unmet needs, and avoidance of medical care. There is a clear need for novel approaches to health care delivery for people who inject drugs. <strong>Objective:</strong> This study aimed to analyze the process of a multidisciplinary team—encompassing health care professionals, community representatives, researchers, and people with lived experience using drugs—that was formed to develop a deep understanding of the experiences of people who inject drugs and local ecosystem opportunities and constraints to inform the cocreation of low-barrier, innovative HCV or HIV care in a rural community. Given the need for innovative approaches to redesigning health care, we sought to identify challenges and tensions encountered in this process and strategies for overcoming these challenges. <strong>Methods:</strong> Analysis was based on an in-depth review of meeting notes from the project year, followed by member-checking with the project team to revise and expand upon the challenges encountered and strategies identified to navigate these challenges. <strong>Results:</strong> Challenges and tensions included: scoping the project, setting the pace and urgency of the work, adapting to web-based work, navigating ethics and practice of payment, defining success, and situating the project for sustainability. Strategies to navigate these challenges included: dedicated effort to building personal and meaningful connections, fostering mutual respect, identifying common ground to make shared decisions, and redefining successes. <strong>Conclusions:</strong> While cocreated care presents challenges, the resulting program is strengthened by challenging assumptions and carefully considering various perspectives to think creatively and productively about solutions. 2023-09-20T09:15:18-04:00 https://jopm.jmir.org/2023/1/e45316/ Development of a Family-Centered Communication Tool for Kidney Health in Premature Infants: Qualitative Focus Group Study Using Human-Centered Design Methodology2023-07-10T09:16:06-04:00Michelle C StarrSamantha WallaceCourtney MooreBrandon CockrumBridget HawrylukAaron CarrollWilliam Bennett<strong>Background:</strong> Premature infants are at increased risk of kidney-related complications, including acute kidney injury (AKI) and chronic kidney disease (CKD). The risk of CKD in prematurely born infants is underrecognized by health care teams and caregivers. Understanding how to communicate the risk of CKD to caregivers is essential for longitudinal clinical follow-up and adherence. <strong>Objective:</strong> This study aimed to determine family caregiver attitudes toward kidney health and risk communication during a neonatal intensive care admission. We also sought to understand caregiver preferences for the communication of information surrounding the risk of CKD in premature infants. <strong>Methods:</strong> We augmented standard qualitative group sessions with human-centered design methods to assess parent preferences and clinician perspectives. Caregivers recruited had a prematurely born child who spent time in the neonatal intensive care unit at Riley Hospital for Children in Indianapolis, Indiana, and experienced AKI or another kidney complication, which put them at risk for future CKD. We used a variety of specific design methods in these sessions, including card sorting, projective methods, experience mapping, and constructive methods. <strong>Results:</strong> A total of 7 clinicians and 8 caregivers participated in 3 group sessions. Caregivers and clinicians readily acknowledged barriers to and drivers of long-term kidney monitoring as well as opportunities for communication of the risk of long-term kidney disease. Caregivers’ primary concerns were for both the type and depth of information conveyed as well as the time at which it was communicated. Participants emphasized the importance of collaboration between the hospital care team and the primary care provider. Participant input was synthesized into several prototype concepts and, ultimately, into a rough prototype of a website and an informational flyer. <strong>Conclusions:</strong> Caregivers of premature infants are open to communication about kidney health during their neonatal admission. The next phase of this work will translate caregivers’ preferences into family-centered communication tools and test their efficacy in the neonatal intensive care unit. 2023-07-10T09:16:06-04:00 https://jopm.jmir.org/2023/1/e45772/ Examining Patient Engagement in Chatbot Development Approaches for Healthy Lifestyle and Mental Wellness Interventions: Scoping Review2023-05-22T09:15:32-04:00Chikku SadasivanChristofer CruzNaomi DolgoyAshley HydeSandra CampbellMargaret McNeelyEleni StrouliaPuneeta Tandon<strong>Background:</strong> Chatbots are growing in popularity as they offer a range of potential benefits to end users and service providers. <strong>Objective:</strong> Our scoping review aimed to explore studies that used 2-way chatbots to support healthy eating, physical activity, and mental wellness interventions. Our objectives were to report the nontechnical (eg, unrelated to software development) approaches for chatbot development and to examine the level of patient engagement in these reported approaches. <strong>Methods:</strong> Our team conducted a scoping review following the framework proposed by Arksey and O’Malley. Nine electronic databases were searched in July 2022. Studies were selected based on our inclusion and exclusion criteria. Data were then extracted and patient involvement was assessed. <strong>Results:</strong> 16 studies were included in this review. We report several approaches to chatbot development, assess patient involvement where possible, and reveal the limited detail available on reporting of patient involvement in the chatbot implementation process. The reported approaches for development included: collaboration with knowledge experts, co-design workshops, patient interviews, prototype testing, the Wizard of Oz (WoZ) procedure, and literature review. Reporting of patient involvement in development was limited; only 3 of the 16 included studies contained sufficient information to evaluate patient engagement using the Guidance for Reporting Involvement of Patients and Public (GRIPP2). <strong>Conclusions:</strong> The approaches reported in this review and the identified limitations can guide the inclusion of patient engagement and the improved documentation of engagement in the chatbot development process for future health care research. Given the importance of end user involvement in chatbot development, we hope that future research will more systematically report on chatbot development and more consistently and actively engage patients in the codevelopment process. 2023-05-22T09:15:32-04:00 https://jopm.jmir.org/2023/1/e42704/ Acceptability of Automated Robotic Clinical Breast Examination: Survey Study2023-04-03T09:15:04-04:00George P JenkinsonNatasha HoughtonNejra van ZalkJo WallerFernando BelloAntonia Tzemanaki<strong>Background:</strong> In the United Kingdom, women aged 50 to 70 years are invited to undergo mammography. However, 10% of invasive breast cancers occur in women aged ≤45 years, representing an unmet need for young women. Identifying a suitable screening modality for this population is challenging; mammography is insufficiently sensitive, whereas alternative diagnostic methods are invasive or costly. Robotic clinical breast examination (R-CBE)—using soft robotic technology and machine learning for fully automated clinical breast examination—is a theoretically promising screening modality with early prototypes under development. Understanding the perspectives of potential users and partnering with patients in the design process from the outset is essential for ensuring the patient-centered design and implementation of this technology. <strong>Objective:</strong> This study investigated the attitudes and perspectives of women regarding the use of soft robotics and intelligent systems in breast cancer screening. It aimed to determine whether such technology is theoretically acceptable to potential users and identify aspects of the technology and implementation system that are priorities for patients, allowing these to be integrated into technology design. <strong>Methods:</strong> This study used a mixed methods design. We conducted a 30-minute web-based survey with 155 women in the United Kingdom. The survey comprised an overview of the proposed concept followed by 5 open-ended questions and 17 closed questions. Respondents were recruited through a web-based survey linked to the Cancer Research United Kingdom patient involvement opportunities web page and distributed through research networks’ mailing lists. Qualitative data generated via the open-ended questions were analyzed using thematic analysis. Quantitative data were analyzed using 2-sample Kolmogorov-Smirnov tests, 1-tailed <i>t</i> tests, and Pearson coefficients. <strong>Results:</strong> Most respondents (143/155, 92.3%) indicated that they would definitely or probably use R-CBE, with 82.6% (128/155) willing to be examined for up to 15 minutes. The most popular location for R-CBE was at a primary care setting, whereas the most accepted method for receiving the results was an on-screen display (with an option to print information) immediately after the examination. Thematic analysis of free-text responses identified the following 7 themes: women perceive that R-CBE has the potential to address limitations in current screening services; R-CBE may facilitate increased user choice and autonomy; ethical motivations for supporting R-CBE development; accuracy (and users’ perceptions of accuracy) is essential; results management with clear communication is a priority for users; device usability is important; and integration with health services is key. <strong>Conclusions:</strong> There is a high potential for the acceptance of R-CBE in its target user group and a high concordance between user expectations and technological feasibility. Early patient participation in the design process allowed the authors to identify key development priorities for ensuring that this new technology meets the needs of users. Ongoing patient and public involvement at each development stage is essential. 2023-04-03T09:15:04-04:00