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Journal of Participatory Medicine
The Journal of Participatory Medicine is a peer-reviewed, open access journal with the mission to advance the understanding and practice of participatory medicine among health care professionals and patients.
(Toronto, July 30, 2020) We are pleased to report that the Journal of Participatory Medicine (JoPM) has been accepted for indexing in PubMed Central and PubMed. All articles published since January 2018 can now be found in PubMed Central and PubMed.
The acceptance is the result of a rigorous scientific and technical evaluation by the US National Library's (NLM’s) Library Operations Division, determining that the scientific and editorial character and quality of the Journal of Participatory Medicine merits its inclusion in PMC. In making this decision NLM has considered the suitability of the journal for the NLM collection as well as the opinions of expert consultants.
The Journal's mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice across a variety of participatory medicine areas of focus, including: patient and caregiver empowerment; patient-clinician partnership; use of technology to improve patients’ health and health care; participatory design and citizen science. Papers are published in six areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It will explore how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.
JoPM was self-published between 2009-2017 by the Society of Participatory Medicine, publishing over 200 peer-reviewed articles (Archive of pre-2017 articles). Since 2017, the journal is now proudly published by JMIR Publications, with the Society retaining editorial control (see joint SPM/JMIR Press Release).
All articles submitted after August 2017 are carefully copyedited and typeset, and XML-tagged. Articles from 2018 and on are available in PubMed Central and PubMed.
There are no publishing charges for unfunded research. There is a modest Article Processing Fee ($1500) in case of acceptance for grant-funded research or where authors have access to institutional open access funds, e.g. COMPACT/COPE signatories.
Background: Peer support specialists offering mental health and substance use support services have been shown to reduce stigma, hospitalizations, and health care costs. However, as peer support specialists are part of a fast-growing mental health and substance use workforce in innovative integrated care settings, they encounter various challenges in their new roles and tasks.
Objective: The purpose of this study was to explore peer support specialists’ experiences regarding employment challenges in integrated mental health and substance use workplace settings in New Hampshire, USA.
Methods: Using experience-based co-design, nonpeer academic researchers co-designed this study with peer support specialists. We conducted a series of focus groups with peer support specialists (N=15) from 3 different integrated mental health and substance use agencies. Audio recordings were transcribed. Data analysis included content analysis and thematic analysis.
Results: We identified 90 final codes relating to 6 themes: (1) work role and boundaries, (2) hiring, (3) work-life balance, (4) work support, (5) challenges, and (6) identified training needs.
Conclusions: The shared values of experience-based co-design and peer support specialists eased facilitation between peer support specialists and nonpeer academic researchers, and indicated that this methodology is feasible for nonpeer academic researchers and peer support specialists alike. Participants expressed challenges with agency restrictions, achieving work-life balance, stigma, and low compensation. We present actionable items to address these challenges in integrated mental health and substance use systems to potentially offset workforce dissatisfaction and high turnover rates.
Background: Giving patients access to their medical records (ie, open health records) can support doctor-patient communication and patient-centered care and can improve quality of care, patients’ health literacy, self-care, and treatment adherence. In Germany, patients are entitled by law to have access to their medical records. However, in practice doing so remains an exception in Germany. So far, research has been focused on organizational implementation barriers. Little is known about physicians’ attitudes and perspectives toward opening records in German primary care.
Objective: This qualitative study aims to provide a better understanding of physicians’ attitudes toward opening records in primary care in Germany. To expand the knowledge base that future implementation programs could draw from, this study focuses on professional self-conception as an influencing factor regarding the approval for open health records. Perspectives of practicing primary care physicians and advanced medical students were explored.
Methods: Data were collected through semistructured guide-based interviews with general practitioners (GPs) and advanced medical students. Participants were asked to share their perspectives on open health records in German general practices, as well as perceived implications, their expectations for future medical records, and the conditions for a potential implementation. Data were pseudonymized, audiotaped, and transcribed verbatim. Themes and subthemes were identified through thematic analysis.
Results: Barriers and potential advantages were reported by 7 GPs and 7 medical students (N=14). The following barriers were identified: (1) data security, (2) increased workload, (3) costs, (4) the patients’ limited capabilities, and (5) the physicians’ concerns. The following advantages were reported: (1) patient education and empowerment, (2) positive impact on the practice, and (3) improved quality of care. GPs’ professional self-conception influenced their approval for open records: GPs considered their aspiration for professional autonomy and freedom from external control to be threatened and their knowledge-based support of patients to be obstructed by open records. Medical students emphasized the chance to achieve shared decision making through open records and expected the implementation to be realistic in the near future. GPs were more hesitant and voiced a strong resistance toward sharing notes on perceptions that go beyond clinical data. Reliable technical conditions, the participants’ consent, and a joint development of the implementation project to meet the GPs’ interests were requested.
Conclusions: Open health record concepts can be seen as a chance to increase transparency in health care. For a potential future implementation in Germany, thorough consideration regarding the compatibility of GPs’ professional values would be warranted. However, the medical students’ positive attitude provides an optimistic perspective. Further research and a broad support from decision makers would be crucial to establish open records in Germany.
Background: Widespread adoption, use, and integration of patient-facing technologies into the workflow of health care systems has been slow, thus limiting the realization of their potential. A growing body of work has focused on how best to promote adoption and use of these technologies and measure their impacts on processes of care and outcomes. This body of work currently suffers from limitations (eg, cross-sectional analyses, limited patient-generated data linked with clinical records) and would benefit from institutional infrastructure to enhance available data and integrate the voice of the patient into implementation and evaluation efforts.
Objective: The Veterans Health Administration (VHA) has launched an initiative called the Veterans Engagement with Technology Collaborative cohort to directly address these challenges. This paper reports the process by which the cohort was developed and describes the baseline data being collected from cohort members. The overarching goal of the Veterans Engagement with Technology Collaborative cohort is to directly engage veterans in the evaluation of new VHA patient-facing technologies and in so doing, to create new infrastructure to support related quality improvement and evaluation activities.
Methods: Inclusion criteria for veterans to be eligible for membership in the cohort included being an active user of VHA health care services, having a mobile phone, and being an established user of existing VHA patient-facing technologies as represented by use of the secure messaging feature of VHA’s patient portal. Between 2017 and 2018, we recruited veterans who met these criteria and administered a survey to them over the telephone.
Results: The majority of participants (N=2727) were male (2268/2727, 83.2%), White (2226/2727, 81.6%), living in their own apartment or house (2519/2696, 93.4%), and had completed some college (1176/2701, 43.5%) or an advanced degree (1178/2701, 43.6%). Cohort members were 59.9 years old, on average. The majority self-reported their health status as being good (1055/2725, 38.7%) or very good (524/2725, 19.2%). Most cohort members owned a personal computer (2609/2725, 95.7%), tablet computer (1616/2716, 59.5%), and/or smartphone (2438/2722, 89.6%).
Conclusions: The Veterans Engagement with Technology Collaborative cohort is an example of a VHA learning health care system initiative designed to support the data-driven implementation of patient-facing technologies into practice and measurement of their impacts. With this initiative, VHA is building capacity for future, rapid, rigorous evaluation and quality improvement efforts to enhance understanding of the adoption, use, and impact of patient-facing technologies.
Background: We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder.
Objective: The aim is to describe the opportunities and challenges of this collaboration and to reflect upon the process of involving youth with bipolar disorder in health research that concerns them, and share lessons learned.
Methods: The project was conducted in multiple phases over 2 years: (1) grant-writing, with youth contributing to the process; (2) recruitment, in which 12 youth were selected and trained to help shape and conduct two research forums; (3) the first research forum, where more youth were consulted about the strategies they apply to stay well (self-management strategies); (4) data analysis of Forum I findings; (5) research Forum II, which consulted youth with bipolar disorder about knowledge translation of Forum I findings; and (6) data analysis of Forum II findings. Youth peer researchers with bipolar disorder were involved in a significant capacity at every stage in the process.
Results: Of the initial 12 youth peer researchers, 7 remained on the project from the recruitment phase until the project ended. They collaborated in the creation of two youth research forums that consulted youth with bipolar disorder on their self-management strategies.
Conclusions: This article shares what was learned from the process of partnering with youth with bipolar disorder in a community-based participatory research study.
Trial Registration:
While the transition toward digitalized health care and service delivery challenges many publicly and privately funded health systems, patients are already producing a phenomenal amount of data on their health and lifestyle through their personal use of mobile technologies. To extract value from such user-generated data, a new insurance model is emerging called Pay-As-You-Live (PAYL). This model differs from other insurance models by offering to support clients in the management of their health in a more interactive yet directive manner. Despite significant promises for clients, there are critical issues that remain unaddressed, especially as PAYL models can significantly disrupt current collective insurance models and question the social contract in so-called universal and public health systems. In this paper, we discuss the following issues of concern: the quantification of health-related behavior, the burden of proof of compliance, client data privacy, and the potential threat to health insurance models based on risk mutualization. We explore how more responsible health insurance models in the digital health era could be developed, particularly by drawing from the Responsible Innovation in Health framework.
Patient and family participation in guideline development is neither standardized nor uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has included patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that inclusion of individuals with cystic fibrosis and their family members on guidelines committees has provided insight otherwise invisible to clinicians.
Background: The gold standard management of aortic dissection, a life-threatening condition, includes multidisciplinary approaches. Although mental distress following aortic dissection is common, evidence-based psychosocial interventions for aortic dissection survivors are lacking.
Objective: The aim of this study is to identify the perceived psychosocial needs of aortic dissection survivors by surveying patients, their relatives, and health professionals to inform the development of such interventions.
Methods: This study used a cross-sectional survey and collected responses from 41 participants (27 patients with aortic dissection, 8 relatives of patients with aortic dissection, and 6 health professionals) on key topics, types of interventions, best timing, anticipated success, and the intended effects and side effects of psychosocial interventions after aortic dissection.
Results: The principal intervention topics were “changes in everyday life” (28/41, 68%, 95% CI 54.5%-82.9%), “anxiety” (25/41, 61%, 95% CI 46.2%-76.2%), “uncertainty” (24/41, 59%, 95% CI 42.9%-73.2%), “tension/distress” (24/41, 59%, 95% CI 43.9%-73.8%), and “trust in the body” (21/41, 51%, 95% CI 35.9%-67.5%). The most commonly indicated intervention types were “family/relative therapy” (21/41, 51%, 95% CI 35%-65.9%) and “anxiety treatment” (21/41, 51%, 95% CI 35%-67.5%). The most recommended intervention timing was “during inpatient rehabilitation” (26/41, 63%, 95% CI 47.6%-77.5%) followed by “shortly after inpatient rehabilitation” (20/41, 49%, 95% CI 32.4%-65%). More than 95% (39/41) of respondents anticipated a benefit from psychosocial interventions following aortic dissection dissection, expecting a probable improvement in 68.6% (95% CI 61.4%-76.2%) of aortic dissection survivors, a worse outcome for 5% (95% CI 2.9%-7.9%), and that 6% (95% CI 1.8%-10.4%) would have negative side effects due to such interventions.
Conclusions: Our findings highlight a substantial need for psychosocial interventions in aortic dissection survivors and indicate that such interventions would be a success. They provide a basis for the development and evaluation of interventions as part of state-of-the-art aortic dissection management.
Physician–patient collaboration was recognized as a critical core of participatory medicine more than a century ago. However, the subsequent focus on scientific research to enable cures and increased dominance of physicians in health care subordinated patients to a passive role. This paternalistic model weakened in the past 50 years—as women, minorities, and the disabled achieved greater rights, and as incurable chronic diseases and unrelieved pain disorders became more prevalent—promoting a more equitable role for physicians and patients. By 2000, a shared decision-making model became the pinnacle for clinical decisions, despite a dearth of data on health outcomes, or the model’s reliance on single patient or solo practitioner studies, or evidence that no single model could fit all clinical situations. We report about a young woman with intractable epilepsy due to a congenital brain malformation whose family and medical specialists used a collaborative decision-making approach. This model positioned the health professionals as supporters of the proactive family, and enabled them all to explore and co-create knowledge beyond the clinical realm. Together, they involved other members of the community in the decisions, while harnessing diverse relationships to allow all family members to achieve positive levels of health, despite the resistance of the seizures to medical treatment and the incurable nature of the underlying disease.
Background: Although some health care market reforms seek to better engage consumers in purchasing health care services, health consumer behavior remains poorly understood.
Objective: This study aimed to characterize the behaviors and sentiment of consumers who attempt to shop for health care services.
Methods: We used a semistructured interview guide based on grounded theory and standard qualitative research methods to examine components of a typical shopping process in a sample size of 54 insured adults. All interviews were systematically coded to capture consumer behaviors, barriers to shopping behavior, and sentiments associated with these experiences.
Results: Participants most commonly described determining and evaluating options, seeking value, and assessing or evaluating value. In total, 83% (45/54) of participants described engaging in negotiations regarding health care purchasing. The degree of positive sentiment expressed in the interview was positively correlated with identifying and determining the health plan, provider, or treatment options; making the decision to purchase; and evaluating the decision to purchase. Conversely, negative sentiment was correlated with seeking value and making the decision to buy.
Conclusions: Consumer shopping behaviors are prevalent in health care purchasing and can be mapped to established consumer behavior models.
Background: Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant Staphylococcus aureus (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection.
Objective: This study aimed to uncover MRSA decolonization outcomes that are important to patients and their parents in order to create a set of prototype measures for use in the MRSA Eradication and Decolonization in Children (MEDiC) study.
Methods: A 4-hour, human-centered design (HCD) workshop was held with 5 adolescents (aged 10-18 years) who had experienced an I&D procedure and 11 parents of children who had experienced an I&D procedure. The workshop explored the patient and family experience with skin infection to uncover patient-centered outcomes of MRSA treatment. The research team analyzed the audio and artifacts created during the workshop and coded for thematic similarity. The final themes represent patient-centered outcome domains to be measured in the MEDiC comparative effectiveness trial.
Results: The workshop identified 9 outcomes of importance to patients and their parents: fewer MRSA outbreaks, improved emotional health, improved self-perception, decreased social stigma, increased amount of free time, increased control over free time, fewer days of school or work missed, decreased physical pain and discomfort, and decreased financial burden.
Conclusions: This study represents an innovative HCD approach to engaging patients and families with lived experience with MRSA SSTIs in the study design and trial development to determine meaningful patient-centered outcomes. We were able to identify 9 major recurrent themes. These themes were used to develop the primary and secondary outcome measures for MEDiC, a prospectively enrolling comparative effectiveness trial.
Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658
Background: Community-acquired methicillin-resistant Staphylococcus aureus (MRSA) skin and soft tissue infections affect many healthy children. A significant number of these children are hospitalized and require surgical incision and drainage (I&D). Once sent home, these children and families are asked to complete burdensome home decolonization and hygiene procedures in an effort to prevent the high rate of recurrent infections.
Objective: This component of the Methicillin-resistant Staphylococcus aureus Eradication and Decolonization in Children (MEDiC) study aimed to develop a toolkit to assist MEDiC study participants in completing MRSA decolonization and hygiene procedures at home (the MEDiC kit).
Methods: In all, 5 adolescents (aged 10-18 years) who had undergone an I&D procedure for a skin infection and 11 parents of children who had undergone an I&D procedure for a skin infection were engaged in a 4-hour group workshop using a human-centered design approach. The topics covered in this workshop and analyzed for this paper were (1) attitudes about MRSA decolonization procedures and (2) barriers to the implementation of MRSA decolonization and hygiene procedures. The team analyzed the audio and artifacts created during the workshop and synthesized their findings to inform the creation of the MEDiC kit.
Results: The workshop activities uncovered barriers to successful completion of the decolonization and hygiene procedures: lack of step-by-step instruction, lack of proper tools in the home, concerns about adverse events, lack of control over some aspects of the hygiene procedures, and general difficulty coordinating all the procedures. Many of these could be addressed as part of the MEDiC kit. In addition, the workshop revealed that effective communication about decolonization would have to address concerns about the effects of bleach, provide detailed information, give reasons for the specific decolonization and hygiene protocol steps, and include step-by-step instructions (preferably through video).
Conclusions: Through direct engagement with patients and families, we were able to better understand how to support families in implementing MRSA decolonization and hygiene protocols. In addition, we were able to better understand how to communicate about MRSA decolonization and hygiene protocols. With this knowledge, we created a robust toolkit that uses patient-driven language and visuals to help support patients and families through the implementation of these protocols.
Trial Registration: ClinicalTrials.gov NCT02127658; https://clinicaltrials.gov/ct2/show/NCT02127658
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.
