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Journal Description

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 for submission 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. 

 

Recent Articles:

  • Source: Freepik; Copyright: pressfoto; URL: https://www.freepik.com/free-photo/appointment-with-physician_5399289.htm; License: Licensed by JMIR.
    Opinion:Viewpoints,Columns,Perspectiv...

    Jul 13, 2020

    Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience

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    Abstract:

    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.

  • Source: Pixabay; Copyright: Golda Falk; URL: https://pixabay.com/de/photos/ambulance-krankenwagen-feuerwehr-970037/; License: Licensed by the authors.
    Evidence: Original Papers

    Jul 6, 2020

    Perceived Need for Psychosocial Support After Aortic Dissection: Cross-Sectional Survey

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    Abstract:

    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.

  • The Caridi Family, which inspired and led efforts to bring participatory medicine through collaborative decision making into the real world. Source: Image created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2020/2/e17602/; License: Creative Commons Attribution (CC-BY).
    Opinion:Viewpoints,Columns,Perspectiv...

    Jun 22, 2020

    Experiencing Positive Health, as a Family, While Living With a Rare Complex Disease: Bringing Participatory Medicine Through Collaborative Decision Making...

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    Abstract:

    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.

  • Source: freepik; Copyright: pressfoto; URL: https://www.freepik.com/free-photo/filling-medical-record_5633838.htm#page=1&query=person%20with%20doctor&position=18; License: Licensed by JMIR.
    Evidence: Original Papers

    Jun 16, 2020

    Health Care Consumer Shopping Behaviors and Sentiment: Qualitative Study

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    Abstract:

    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.

  • Parent-created collage about how her child having a skin infection makes her feel. Source: Image created by the Authors; Copyright: Indiana Clinical and Translational Sciences Institute; URL: http://jopm.jmir.org/2020/2/e14973/; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).
    Evidence: Original Papers

    May 20, 2020

    Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 2): Patient- and Parent-Centered Outcomes of Decolonization

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    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

  • The Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children study kit for helping families adhere to decolonization protocols. Source: Image created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2020/2/e14974/; License: Creative Commons Attribution + Noncommercial + NoDerivatives (CC-BY-NC-ND).
    Evidence: Original Papers

    May 20, 2020

    Methicillin-Resistant Staphylococcus aureus Eradication and Decolonization in Children Study (Part 1): Development of a Decolonization Toolkit With Patient...

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    Abstract:

    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

  • Source: Flickr; Copyright: Nenad Stojkovic; URL: http://www.flickr.com/photos/156445661@N02/49147301967; License: Creative Commons Attribution (CC-BY).
    Evidence: Original Papers

    May 15, 2020

    Non-Hispanic White Mothers’ Willingness to Share Personal Health Data With Researchers: Survey Results From an Opt-in Panel

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    Abstract:

    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.

  • Source: Shutterstock; Copyright: sportpoint; URL: https://www.shutterstock.com/image-photo/running-autumn-trail-on-male-athlete-1151061857; License: Licensed by the authors.
    Opinion:Viewpoints,Columns,Perspectiv...

    Apr 16, 2020

    From Passive Patient to Engaged Partner: My Journey With Parkinson Disease

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    Abstract:

    This patient narrative by Richard Higgins with Maureen Hennessey describes Richard's journey of learning to live with a chronic and progressive illness. It begins with Richard's diagnosis and shares many of the lessons learned along the way. Richard copes daily with this condition, relying on the support and expertise of his wife and the treatment team he has assembled while also encouragingly drawing on the skills and knowledge gained as a longtime running coach. A clinical commentary is provided at the article's conclusion, drafted by Richard's friend, Maureen Hennessey, PhD, CPCC, CPHQ, offering observations about the relevance of Richard's story to participatory medicine and suggesting pertinent resources for patients and health care professionals.

  • Source: freepik; Copyright: pressfoto; URL: https://www.freepik.com/free-photo/business-session_5402753.htm#page=6&query=group+of+people+discussing&position=34https://www.freepik.com/free-photo/business-session_5402753.htm#page=6&query=group+of+people+discussing&position=34; License: Licensed by JMIR.
    Evidence: Original Papers

    Mar 30, 2020

    Influence of Community and Culture in the Ethical Allocation of Scarce Medical Resources in a Pandemic Situation: Deliberative Democracy Study

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    Background: Stark gaps exist between projected health needs in a pandemic situation and the current capacity of health care and medical countermeasure systems. Existing pandemic ethics discussions have advocated to engage the public in scarcity dilemmas and attend the local contexts and cultural perspectives that shape responses to a global health threat. This public engagement study thus considers the role of community and culture in the ethical apportionment of scarce health resources, specifically ventilators, during an influenza pandemic. It builds upon a previous exploration of the values and preferences of Maryland residents regarding how a finite supply of mechanical ventilators ought to be allocated during a severe global outbreak of influenza. An important finding of this earlier research was that local history and place within the state engendered different ways of thinking about scarcity. Objective: Given the intrastate variation in the themes expressed by Maryland participants, the project team sought to examine interstate differences by implementing the same protocol elsewhere to answer the following questions. Does variation in ethical frames of reference exist within different regions of the United States? What practical implications does evidence of sameness and difference possess for pandemic planners and policymakers at local and national levels? Methods: Research using the same deliberative democracy process from the Maryland study was conducted in Central Texas in March 2018 among 30 diverse participants, half of whom identified as Hispanic or Latino. Deliberative democracy provides a moderated process through which community members can learn facts about a public policy matter from experts and explore their own and others’ views. Results: Participants proposed that by evenly distributing supplies of ventilators and applying clear eligibility criteria consistently, health authorities could enable fair allocation of scarce lifesaving equipment. The strong identification, attachment, and obligation of persons toward their nuclear and extended families emerged as a distinctive regional and ethnic core value that has practical implications for the substance, administration, and communication of allocation frameworks. Conclusions: Maryland and Central Texas residents expressed a common, overriding concern about the fairness of allocation decisions. Central Texas deliberants, however, more readily expounded upon family as a central consideration. In Central Texas, family is a principal, culturally inflected lens through which life and death matters are often viewed. Conveners of other pandemic-related public engagement exercises in the United States have advocated the benefits of transparency and inclusivity in developing an ethical allocation framework; this study demonstrates cultural competence as a further advantage.

  • Source: Imagine created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2020/1/e13763/; License: Licensed by JMIR.
    Opinion:Viewpoints,Columns,Perspectiv...

    Mar 25, 2020

    Crafting Care That Fits: Workload and Capacity Assessments Complementing Decision Aids in Implementing Shared Decision Making

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    Abstract:

    About 42% of adults have one or more chronic conditions and 23% have multiple chronic conditions. The coordination and integration of services for the management of patients living with multimorbidity is important for care to be efficient, safe, and less burdensome. Minimally disruptive medicine may optimize this coordination and integration. It is a patient-centered approach to care that focuses on achieving patient goals for life and health by seeking care strategies that fit a patient’s context and are minimally disruptive and maximally supportive. The cumulative complexity model practically orients minimally disruptive medicine–based care. In this model, the patient workload-capacity imbalance is the central mechanism driving patient complexity. These elements should be accounted for when making decisions for patients with chronic conditions. Therefore, in addition to decision aids, which may guide shared decision making, we propose to discuss and clarify a potential workload-capacity imbalance.

  • Source: ShutterStock; Copyright: adriaticfoto; URL: https://www.shutterstock.com/ja/image-photo/senior-couple-discussion-health-visitor-home-1037085844; License: Licensed by the authors.
    Evidence: Original Papers

    Mar 19, 2020

    Relationship Between Health Literacy and Social Support and the Quality of Life in Patients With Cancer: Questionnaire Study

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    Background: Low health literacy is associated with factors such as not taking medication as prescribed as well as poor health status and increased hospitalization and mortality risk, and has been identified as a risk factor for decreased physical function in older individuals. Health literacy is becoming an increasingly important issue because of the increased number of people affected by cancer who must make complicated treatment decisions. Health literacy has been shown to be positively associated with quality of life (QOL), and social support has been identified as important for addressing health-related problems and reducing the relative risk of mortality in patients with cancer. However, few studies have examined the relationship between health literacy, social support, age, and QOL. Objective: The aim of this study is to examine the effects of health literacy, social support, and age on the QOL of patients with cancer. Methods: An anonymous, self-administered online questionnaire was conducted from March 28 to 30, 2017, in Japan on patients with lung, stomach, or colon cancer that were voluntarily registered with an internet survey company. The survey covered basic attributes, health literacy, social support, and QOL. The European Health Literacy Survey Questionnaire, a comprehensive measure of health literacy instrument, was used to measure health literacy; the Japanese version of the Social Support Scale was used to measure social support; and the Japanese version of the Functional Assessment of Cancer Therapy-General (7-item version) assessment tool was used to measure QOL. Results: A total of 735 survey invitations were randomly sent to patients with lung, stomach, or colorectal cancer, and responses were obtained from 619 (82.2% response rate). Significant effects on the QOL in patients with lung, stomach, or colon cancer were observed for health literacy, social support, and age, and for the interactions of health literacy and social support and of social support and age. Health literacy, social support, and the interaction between these variables also showed a significant effect on the QOL in patients 50 years or older, but not on those younger than 50 years. Conclusions: The results of this study revealed that higher health literacy, social support, and age were associated with the QOL in patients with cancer. In addition, the relationship with QOL was stronger for social support than for health literacy. These findings suggest the importance of health literacy and social support and indicate that social support has a greater effect on QOL than does health literacy, while the QOL in patients with cancer aged younger than 50 years was lower than that of those 50 years or older. Therefore, elucidating the needs of these patients and strengthening social support based on those needs may improve their QOL.

  • Source: Pixabay; Copyright: janeb13; URL: https://pixabay.com/photos/computer-pc-workplace-home-office-1185626/; License: Licensed by the authors.
    2020 Theme Issue "Patient Experience"

    Mar 18, 2020

    Traumatic Brain Injury and Sexuality: User Experience Study of an Information Toolkit

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    Abstract:

    Background: After having sustained a traumatic brain injury (TBI), individuals are at risk of functional impairments in information processing, abstract reasoning, executive functioning, attention, and memory. This affects different aspects of communicative functioning. Specific strategies can be adopted to improve the provision of health information to individuals with TBI, including the development of written materials and nonwritten media. Objective: A user-centered design was adopted to codevelop four audiovisual presentations, a double-sided information sheet, and a checklist aimed at informing individuals about post-TBI sexuality. The last phase of the project was the assessment of the user experience of the information toolkit, based on the User Experience Honeycomb model. Methods: Overall, two small group discussions and one individual semistructured interview were conducted with individuals with moderate to severe TBI. Results: The participants mentioned that the toolkit was easily usable and would have fulfilled a need for information on post-TBI sexuality during or after rehabilitation. They mostly agreed that the minimalist visual content was well-organized, attractive, and relevant. The information was easily located, the tools were accessible in terms of reading and visibility, and the content was also considered credible. Conclusions: Aspects such as usability, usefulness, desirability, accessibility, credibility, and findability of information were viewed positively by the participants. Further piloting of the toolkit is recommended to explore its effects on the awareness of the potential sexual repercussions of TBI in individuals and partners.

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