JMIR Publications

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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.

It is the Official Journal of the Society for Participatory Medicine.


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, focusing on six content areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It explores 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 an institutional open access funds, e.g. COMPACT/COPE signatories. 


Recent Articles:

  • Source: Flickr; Copyright: hellocoolworld; URL:; License: Creative Commons Attribution (CC-BY).

    Patient and Family Involvement: A Discussion of Co-Led Redesign of Healthcare Services


    The involvement of patients and their families in the redesign of healthcare services is an important option in providing a service that addresses the patients’ needs and improves health outcomes. However, it is a resource-intensive approach, and it is currently not clear when it should be used, and what should be the reasoning behind this decision. Some health systems of international standing have created a patient engagement program as a selling point. This paper discusses how co-led redesign can be beneficial in improving health service and more effectively engaging patients. Potential barriers for patient involvement are discussed. Patient involvement can be integrated into the health system at three main levels of engagement: direct care, organizational design and governance, and policy-making. The aim of this paper is to describe how co-led redesign is compatible with different levels of patient involvement and to address the challenges in delivering a co-led redesign in healthcare. Co-led redesign not only involves the collection of quantitative data for assessing the current systems but also the collection of qualitative data through patient, family, and staff interviews to determine the barriers to patient satisfaction. Co-led redesign is a resource-rich process that requires expertise in data collection and a clinical group that is devoted to implementing recommended changes. Currently, a number of countries have utilized co-led redesign for many different types of healthcare services. Resource availability and cost, process time, and lack of outcome measures are three major limiting factors.

  • Source: Image created by the Authors; Copyright: The Authors; URL:; License: Creative Commons Attribution (CC-BY).

    Participant-Partners in Genetic Research: An Exome Study with Families of Children with Unexplained Medical Conditions


    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.

  • Source: iStock by Getty Images; Copyright: megaflopp; URL:; License: Licensed by the authors.

    Patient Experiences in a Linguistically Diverse Safety Net Primary Care Setting: Qualitative Study


    Background: The patient-centered medical home model intends to improve patient experience and primary care quality. Within an urban safety net setting in Northern California, United States, these desired outcomes are complicated by both the diversity of the patient community and the care continuity implications of a residency program. Objective: The objective of our study was to understand the patient experience beyond standardized satisfaction measures. Methods: We conducted a qualitative study, interviewing 19 patients from the clinic (English-, Spanish-, or Mien-speaking patients). Results: Some themes, such as the desire to feel confident in their doctor, emerged across language groups, pointing to institutional challenges. Other themes, such as distrust in care being provided, were tied distinctly to speaking a language different from one’s provider. Still other themes, such as a sense of powerlessness, were related to cultural differences and to speaking a language (Mien) not spoken by staff. Conclusions: Findings illuminate the need to understand cultural behaviors and interactional styles in a diverse patient population to create a high-quality medical home.

  • Upper limb strengthening with physioball. Source: Flickr; Copyright: Roger Mommaerts; URL:; License: Creative Commons Attribution + ShareAlike (CC-BY-SA).

    Interventions to Improve Movement and Functional Outcomes in Adult Stroke Rehabilitation: Review and Evidence Summary


    Background: Patients who have had a stroke may not be familiar with the terminology nor have the resources to efficiently search for evidence-based rehabilitation therapies to restore movement and functional outcomes. Recognizing that a thorough systematic review on this topic is beyond the scope of this article, we conducted a rapid review evidence summary to determine the level of evidence for common rehabilitation interventions to improve movement/motor and functional outcomes in adults who have had a stroke. Objective: The objective of this study was to find evidence for common rehabilitation interventions to improve movement/motor and functional outcomes in adults who have had a stroke. Methods: Medline Complete, PubMed, CINAHL Complete, Cochrane Database, Rehabilitation and Sports Medicine Source, Dissertation Abstracts International, and National Guideline Clearinghouse, from 1996 to April of 2016, were searched. From 348 articles, 173 met the following inclusion criteria: (1) published systematic reviews or meta-analyses, (2) outcomes target functional movement or motor skills of the upper and lower limbs, (3) non-pharmacological interventions that are commonly delivered to post-stroke population (acute and chronic), (4) human studies, and (5) English. Evidence tables were created to analyze the findings of systematic reviews and meta-analyses by category of interventions and outcomes. Results: This rapid review found that the following interventions possess credible evidence to improve functional movement of persons with stroke: cardiorespiratory training, therapeutic exercise (ie, strengthening), task-oriented training (task-specific training), constraint-induced movement therapy (CIMT), mental practice, and mirror therapy. Neuromuscular electrical stimulation (NMES) (ie, functional electrical stimulation) shows promise as an intervention for stroke survivors. Conclusions: Most commonly delivered therapeutic interventions to improve motor recovery after a stroke possess moderate quality evidence and are effective. Future research recommendations, such as optimal timing and dosage, would help rehabilitation professionals tailor interventions to achieve the best outcomes for stroke survivors.

  • Source: Pixabay; Copyright: Nancy Mure; URL:; License: Public Domain (CC0).

    A Snapshot of Community Engagement in Research in the Context of an Evolving Public Health Paradigm: Review


    Background: Community engagement is a work in process. Researchers continue to refine the process of collaboration and look to best practice and lessons learned for guidance in this relatively new model. Objective: The aim of this study was to provide a snapshot of whether community engagement has been included in the design and implementation of research initiatives in Australia, Canada and the United Kingdom. The secondary aim is to identify the underlying themes present, to identify theories and tools that drive research. Methods: A literature search was performed to identify studies that have been conducted to reduce the weight of the general population. Results: The results of the study, which focused on the field of weight loss, indicate that scientific and technological advancements are the primary drivers of research. However, these new research initiatives have largely been undertaken in the absence of community engagement. Conclusions: The study concludes that initiatives need to adapt to a wider range of stakeholders, develop equitable community engagement platforms and take into consideration.

  • Health journey (Grand Canyon). Source: Image created by the Author; Copyright: The Author; URL:; License: Creative Commons Attribution (CC-BY).

    Communication at Transitions: One Audacious Bite at a Time

    Authors List:


    To be audacious and take significant steps toward achieving the Quadruple Aim (improving the patient experience of care; improving the health of populations; reducing the per capita cost of health care; and improving the work life of clinicians and staff), we patients and caregivers need to better understand key features of our health journeys. When on that health journey, we are patients interacting with a series of care teams: our home team (social network), our community agency teams, our emergency care team, our hospital teams, and on and on. These care teams include ourselves, our caregivers, clinicians, other professionals, and direct care and support staff—people at the center of care. The actions taken by people at the center of care to improve, maintain, or adapt to our health or illness represents our health care. Actions can be diagnostic, taking medications, undergoing procedures, learning, living life and getting help living life. So, our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey. One of the most persistent and ubiquitous frustrations in health care is that of poor communication. Poor communication at transitions is at the root of much overuse, underuse, and misuse of health resources, and results in the inability of patients to complete recommended treatment. For the patient and their family this means unnecessary delays in returning to health or worse. For those professionals on the care team the incidents of harm, burnout, stress, and frustration cause financial, emotional and career-ending consequences. Poor communication at transitions impacts each of the Quadruple Aims. The potential return for the investment in communication may cross over one or more organizational boundaries. Organization Boards and the C-Suite customarily focus on activities within their institutions, not between. The daunting nature of the challenge, caused by the shear volume and variety of transition nodes, can paralyze those in decision making roles, leading to smaller, more manageable local solutions. I support building a more holistic solution that includes the necessary governance, infrastructure, habits, and relationships. This leads to systematically applied common standards for local, node-specific solutions. Development should include all persons at the center of care in governance, design, operations and learning for systemic and local solutions. Refined clinical work flow should be constructed to respect patient and care partner life flow. Solutions should use interoperable technology to aid, not replace, communication. Transition information and processes should be transparent to patients and their care partners.

  • Source: Shutterstock; Copyright: igorstevanovic; URL:; License: Licensed by JMIR.

    Patients’ Participation in Health Research: A Classification of Cooperation Schemes

    Authors List:


    Background: The number of academic papers referring to patient engagement or to related terms has been rising sharply for at least 20 years; several review articles have recently been published enumerating a wide variety of situations of patient involvement in research and partnership with health professionals. Objective: As no standardized keywords and no shared classifications exist to facilitate comparative studies of situations where patients and their organizations are recognized as coresearchers, this paper purports to create a typology to analyze those situations. Methods: Based on 8 already existing meta-reviews or related studies, this work is achieved using a template based on Claude Bernard’s conceptualization about experimental medicine. Results: This typology allows differentiating between modes of involvement and levels of patients reflexivity mobilized in evidence-based medicine (EBM) trials. Screening through a first set of various meta-reviews using this typology shows that a high level of reflexivity is seldom observed and seen only when a patient organization (PO) is involved in the process. This suggests that such an organization can play several roles essential to high reflexivity trials; the PO is capable not only of grouping singular approaches but also of synchronizing and correlating them. However, as nowadays health researchers and POs give more attention to syndromes or troubles for which EBM clinical trials are not relevant due to lack of biomedical indicators (eg, fibromyalgia, chronic fatigue syndrome, or psychiatric disorders), a supplementary mediation category is added to take into account action-research, community-based participatory research, and grounded theories. Conclusions: With this new category, this typology should be able to classify most of the cooperation schemes and thus be a useful tool for the next systematic reviews.

  • Source: Shutterstock; Copyright: Kinga; URL:; License: Licensed by JMIR.

    The Effects of Coaching Patients to List Questions Before Visiting Cancer Specialists: Retrospective Evaluation of Visit Preparation in a Rural, Underserved...


    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.

  • Explaining ROAR (Reaching Out with Arthritis Research). Source: Arthritis Research Canada /; Copyright: JMIR Publications; License: Creative Commons Attribution (CC-BY).

    Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event


    Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB’s decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.

  • Source: Pixabay; Copyright: Pexels; URL:; License: Public Domain (CC0).

    Information and Communication Technologies to Support Chronic Disease Self-Management: Preconditions for Enhancing the Partnership in Person-Centered Care


    Objective: In order to alleviate the pressure on health care systems exerted by the growing prevalence of chronic diseases, information and communication technologies (ICT) are being introduced to enable self-management of chronic diseases by supporting partnerships between patients and health care professionals. This move towards chronic disease self-management is accompanied by a shift in focus on integrating the patient with his or her perceptions on the chronic disease as a full-fledged partner into the health care system. This new perspective has been described as “person-centered care” (PCC). To date, information and communication technologies only partially build on the principles of PCC. This paper examines the preconditions of ICT to enable a person-centered approach to chronic disease management. Methods: Using cancer treatment as a case study for ICT-enabled PCC, we conducted a comparative analysis of thirteen scientific studies on interventions presented as ICT-enabled PCC for cancer treatment, to answer the research question: What are the preconditions of ICT-enabled PCC in chronic disease management? Based on the intended and actual outcomes, we distilled in several analytic steps the preconditions of ICT-enabled PCC for chronic disease self-management. Results: We distinguished four user-related preconditions of ICT-enabled PCC: (shared) decision making, personalized ICT, health-related quality of life, and efficiency. Conclusions: We argue that these four preconditions together can improve people’s self-management of chronic diseases by strengthening the partnership between the patient and the healthcare professional. Moreover, the study revealed a discrepancy between intended and reported actual outcomes in terms of realizing person-centered care.

  • Columbia University Medical Centre. Source: Wikimedia Commons; Copyright: Mightychip26; URL:; License: Public Domain (CC0).

    Should Hospital Patients Have Bedside Access to Their Complete Medical Records?



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  • A Systematic Literature Review of Shared Decision Making in Cancer Care

    Date Submitted: Jan 9, 2018

    Open Peer Review Period: Jan 10, 2018 - Mar 7, 2018

    Background: Shared decision making (SDM) is a process in which health care providers and patients relate to and influence each other as they collaborate in making decisions about patients’ health ca...

    Background: Shared decision making (SDM) is a process in which health care providers and patients relate to and influence each other as they collaborate in making decisions about patients’ health care. Hypothesized as a means to improve quality of care, successful applications of SDM in routine cancer care have not been widely documented. Objective: The objective of this study was to examine the literature to determine if elements of SDM implementation between cancer patients and their clinicians were more or less successful at improving the quality of care and health outcomes. Methods: A systematic literature search of SDM approaches and outcomes in cancer care was conducted using PubMed and EMBASE. An integrative model for SDM was used to classify elements included in SDM intervention studies and the resulting outcomes. Results: From 1,018 unique publications, 23 articles meeting eligibility criteria were included. Only three studies addressed elements of patient-clinician interaction as part of the study objectives. Interventions included decision aid (DA) evaluation (n=22) and clinician communication training (n=1). SDM elements commonly included were: defining/explaining the problem (n=23); presenting options (n=19); discussing pros and cons (n=17); assessing patient priorities and preferences (n=17); clinician knowledge and recommendations (n=15); and making or deferring treatment decisions (n=12). The most frequently-measured outcomes were patient-reported outcomes including treatment preference or decision (n=12), decisional conflict (n=10), patient satisfaction (n=10), patient participation (n=9), and patient knowledge (n=7). No clear patterns demonstrating relationships between SDM elements and outcomes were identified. Information on how patients and clinicians utilized DA information to promote SDM was limited. Conclusions: Evaluation of SDM in cancer care has been increasing. However, the term “SDM” was generally applied to studies that focused on the development and/or evaluation of DAs which limited the current analyses to a review of SDM elements as part of the DAs. Most studies did not include a qualitative or quantitative measure of SDM specific to patient-clinician communication and interaction. Instead, there was an underlying assumption that SDM occurred organically with DA implementation. Without a qualitative or quantitative measure of SDM, identification of successful SDM elements and their relationships to patient outcomes remains unclear. Additional research is warranted on SDM implementation and measurement in real-world cancer care settings.