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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.

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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, 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: Image created by the Authors; Copyright: The Authors; URL: http://jopm.jmir.org/2018/2/e7/; License: Creative Commons Attribution (CC-BY).

    A Decision Aid to Support Shared Decision Making About Mechanical Ventilation in Severe Chronic Obstructive Pulmonary Disease Patients (InformedTogether):...

    Abstract:

    Background: Severe Chronic Obstructive Pulmonary Disease patients are often unprepared to make decisions about accepting intubation for respiratory failure. We developed a Web-based decision aid, InformedTogether, to facilitate severe Chronic Obstructive Pulmonary Disease patients’ preparation for decision making about whether to accept invasive mechanical ventilation for respiratory failure. Objective: We describe feasibility testing of the InformedTogether decision aid. Methods: Mixed methods, pre- and postintervention feasibility study in outpatient pulmonary and geriatric clinics. Clinicians used InformedTogether with severe Chronic Obstructive Pulmonary Disease patients. Patient-participants completed pre- and postassessments about InformedTogether use. The outcomes measured were the following: feasibility/acceptability, communication (Combined Outcome Measure for Risk Communication [COMRADE], Medical Communication Competency Scale [MCCS], Observing Patient Involvement [OPTION] scales), and effectiveness of InformedTogether on changing patients' knowledge, Decisional Conflict Scale, and motivation. Results: We enrolled 11 clinicians and 38 Chronic Obstructive Pulmonary Disease patients at six sites. Feasibility/acceptability: Clinicians and patients gave positive responses to acceptability questions (mean 74.1/89 max [SD 7.24] and mean 59.63/61 [SD 4.49], respectively). Communication: 96% of clinicians stated InformedTogether improved communication (modified MCCS mean 44.54/49 [SD 2.97]; mean OPTION score 32.03/48 [SD 9.27]; mean COMRADE Satisfaction 4.31/5.0 [SD 0.58]; and COMRADE Confidence 4.18/5.0 [SD 0.56]). Preference: Eighty percent of patients discussed preferences with their surrogates by 1-month. Effectiveness: Knowledge scores increased significantly after using InformedTogether (mean difference 3.61 [SD 3. 44], P=.001) and Decisional Conflict decreased (mean difference Decisional Conflict Scale pre/post -13.76 [SD 20.39], P=.006). Motivation increased after viewing the decision aid. Conclusions: InformedTogether supports high-quality communication and shared decision making among Chronic Obstructive Pulmonary Disease patients, clinicians, and surrogates. The increased knowledge and opportunity to deliberate and discuss treatment choices after using InformedTogether should lead to improved decision making at the time of critical illness.

  • Patient and parent participants in a prototyping session for a Diabetes Management Plan Tool. Source: Image created by the Authors; Copyright: Indiana Clinical and Translational Sciences Institute; URL: https://researchjam.org/wp-content/uploads/2018/04/DiabetesPlan.png; License: Licensed by JMIR.

    Codesigned Shared Decision-Making Diabetes Management Plan Tool for Adolescents With Type 1 Diabetes Mellitus and Their Parents: Prototype Development and...

    Abstract:

    Background: Adolescents with type 1 diabetes mellitus have difficulty achieving optimal glycemic control, partly due to competing priorities that interfere with diabetes self-care. Often, significant diabetes-related family conflict occurs, and adolescents’ thoughts and feelings about diabetes management may be disregarded. Patient-centered diabetes outcomes may be better when adolescents feel engaged in the decision-making process. Objective: The objective of our study was to codesign a clinic intervention using shared decision making for addressing diabetes self-care with an adolescent patient and parent advisory board. Methods: The patient and parent advisory board consisted of 6 adolescents (teens) between the ages 12 and 18 years with type 1 diabetes mellitus and their parents recruited through our institution’s Pediatric Diabetes Program. Teens and parents provided informed consent and participated in 1 or both of 2 patient and parent advisory board sessions, lasting 3 to 4 hours each. Session 1 topics were (1) patient-centered outcomes related to quality of life, parent-teen shared diabetes management, and shared family experiences; and (2) implementation and acceptability of a patient-centered diabetes care plan intervention where shared decision making was used. We analyzed audio recordings, notes, and other materials to identify and extract ideas relevant to the development of a patient-centered diabetes management plan. These data were visually coded into similar themes. We used the information to develop a prototype for a diabetes management plan tool that we pilot tested during session 2. Results: Session 1 identified 6 principal patient-centered quality-of-life measurement domains: stress, fear and worry, mealtime struggles, assumptions and judgments, feeling abnormal, and conflict. We determined 2 objectives to be principally important for a diabetes management plan intervention: (1) focusing the intervention on diabetes distress and conflict resolution strategies, and (2) working toward a verbalized common goal. In session 2, we created the diabetes management plan tool according to these findings and will use it in a clinical trial with the aim of assisting with patient-centered goal setting. Conclusions: Patients with type 1 diabetes mellitus can be effectively engaged and involved in patient-centered research design. Teens with type 1 diabetes mellitus prioritize reducing family conflict and fitting into their social milieu over health outcomes at this time in their lives. It is important to acknowledge this when designing interventions to improve health outcomes in teens with type 1 diabetes mellitus.

  • REach web app (montage). Source: The Authors / Smartmockups.com; Copyright: JMIR Publications; URL: https://jopm.jmir.org/2018/2/e6/; License: Creative Commons Attribution (CC-BY).

    Utilizing Consumer Technology (Apple’s ResearchKit) for Medical Studies by Patients and Researchers: Proof of Concept of the Novel Platform REach

    Abstract:

    Medical research suffers from declining response rates, hampering the quest for answers to clinically relevant research questions. Furthermore, objective data on a number of important study variables, such as physical activity, sleep, and nutrition, are difficult to collect with the traditional methods of data collection. Reassuringly, current technological developments could overcome these limitations. In addition, they may enable research being established by patients themselves provided that they have access to a user-friendly platform. Using the features of Apple's ResearchKit, an informed consent procedure, questionnaire, linkage with HealthKit data, and “active tasks” may be administered through a publicly available app. However, ResearchKit requires programming skills, which many patients and researchers lack. Therefore, we developed a platform (REach) with drag and drop functionalities producing a ready-to-use code that can be embedded in existing or new apps. Participants in the pilot study were very satisfied with data collection through REach and measurement error was minimal. In the era of declining participation rates in observational studies and patient involvement, new methods of data collection, such as REach, are essential to ensure that clinically relevant research questions are validly answered. Due to linkage with HealthKit and active tasks, objective health data that are impossible to collect with the traditional methods of data collection can easily be collected.

  • Source: Flickr; Copyright: hellocoolworld; URL: https://www.flickr.com/photos/59308652@N02/5431718990/in/photostream/; License: Creative Commons Attribution (CC-BY).

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

    Abstract:

    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: http://jopm.jmir.org/2018/1/e2/; License: Creative Commons Attribution (CC-BY).

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

    Abstract:

    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: https://www.istockphoto.com/photo/friendly-female-doctor-hold-patient-hand-in-office-during-recept-gm639863006-115575661; License: Licensed by the authors.

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

    Abstract:

    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: https://www.flickr.com/photos/rmommaerts/5612291072/in/photostream/; License: Creative Commons Attribution + ShareAlike (CC-BY-SA).

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

    Abstract:

    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: https://pixabay.com/en/scale-weight-loss-fitness-dieting-2396062/; License: Public Domain (CC0).

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

    Abstract:

    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: http://jopm.jmir.org/2017/1/e17/; License: Creative Commons Attribution (CC-BY).

    Communication at Transitions: One Audacious Bite at a Time

    Authors List:

    Abstract:

    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: https://www.shutterstock.com/image-photo/female-doctor-patient-consultation-during-medical-530654572; License: Licensed by JMIR.

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

    Authors List:

    Abstract:

    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: https://www.shutterstock.com/image-photo/female-doctor-analyzing-xray-senior-patient-193563467; 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...

    Abstract:

    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 / Placeit.net; Copyright: JMIR Publications; License: Creative Commons Attribution (CC-BY).

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

    Abstract:

    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.

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