The Karma system is currently undergoing maintenance (Monday, January 29, 2018).
The maintenance period has been extended to 8PM EST.
Karma Credits will not be available for redeeming during maintenance.
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.
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.
Right click to copy or hit: ctrl+c (cmd+c on mac)
Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although many qualitat...
Background: Collectively, chronic inflammatory diseases take a great toll on individuals and society in terms of participation restrictions, quality of life, and economic costs. Although many qualitative studies have reported patients’ experiences and challenges living with inflammatory diseases, they are sometimes criticized as non-transferable due to small and highly specific samples. Larger-scale studies could verify patient perspectives across a broader sample and examine similarities in the patient experience across different types of inflammatory diseases. Objective: To identify the significant consequences of inflammatory arthritis, psoriasis, and inflammatory bowel diseases on daily life and explore commonalities across diseases. Methods: A cross-sectional online survey was designed by patient research partners and distributed by representatives of patient organizations via their social media channels and a newspaper story. One open-ended item asked about burdens and responsibilities experienced in daily life. Informed by narrative traditions in qualitative health research, we applied an iterative content analysis to participants’ written accounts in response to this item. This approach is an example of a study conceived, conducted, and interpreted with patients as research partners. Results: 636 Canadians submitted surveys, median age band 55-64 years, 80% women. 540 wrote substantive responses to the open-ended item. Four main narratives were identified: (1) daily life disrupted; (2) socio-economic vulnerabilities; (3) stresses around visible, invisible, and hiding disabilities; and (4) actions aimed at staying positive. Ways in which participants experienced social stigma, pain and fatigue, balancing responsibilities, and worries about the future appeared throughout all four narratives. Conclusions: People living with chronic inflammatory diseases affecting joints, skin, and digestive tract report important gaps between health, social, and economic support systems that create barriers to finding the services they need to sustain their health. Regardless of diagnosis, they report similar experiences navigating the consequences of lifelong conditions which has implications for policy makers. There is a need for outcomes measures in research and service delivery to address patient priorities, and for programs to fill gaps created by the artificial administrative separation of health services, social services, and income assistance.
This manuscript needs more reviewersPeer-Review Me
Background: Self-management of chronic conditions, such as cancer or diabetes, requires coordination of care across multiple care settings. Current patient centered hospital-based care initiatives, in...
Background: Self-management of chronic conditions, such as cancer or diabetes, requires coordination of care across multiple care settings. Current patient centered hospital-based care initiatives, including bedside nursing handoff and multidisciplinary rounds, often retain a focus on provider information exchange and roles but fall short of the goals of participatory medicine, which recognize the right of patients to partner in their own care and take an active role in self-management. Objective: The purpose of this study was to elicit Spanish-speaking Hispanic patients’ perspectives on the exchange and sharing of information during hospitalization. Methods: This exploratory pilot study incorporated a qualitative descriptive approach through the use of Spanish language focus groups, post hospitalization, to determine patient identified information needs during a hospitalization. Results: Participants preferred paper instructions in Spanish. Doctors and nurses were the key information providers and communicated with the participant verbally, usually with the assistance of a translator. The participants expressed a desire to be informed about medications and treatments, including side effects and why there were changes in medications during the hospitalization. They expressed interest in knowing about the progress of their condition and when they could expect to go home. Emotional readiness to receive information about their condition and prognosis was identified as an individual barrier to asking questions and seeking additional information about their condition(s). Conclusions: Overall, participants shared positive experiences with providers during hospitalization and the usefulness of self-care instructions. Language was not recognized as a barrier by any of the participants. Future research on the influence of emotional readiness on timing of medical information is needed.
This manuscript needs more reviewersPeer-Review Me
Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of tel...
Background: Decisions regarding telehealth services in Quebec (Canada) have been largely technocratic by nature for the last 15 years, and the involvement of citizen-patients in the development of telehealth services is virtually non-existent. In view of the societal challenges that telehealth raises, citizen-patient involvement could ensure more balance between evidence from traditional research methodologies and technical experts, and the needs and expectations of populations in decisions about telehealth services. Objective: This study aimed to explore the perception of various stakeholders (decisions-makers, telehealth program and policy managers, clinicians and citizens-patients) regarding the involvement of citizens-patients in the development of telehealth services in Quebec. In particular, we explored its potential advantages, added value, obstacles and challenges it raises for decision-making. Methods: We used a qualitative research approach based on semi-structured individual interviews with a total of 29 key actors. Respondents were identified by the contact network method. Interviews were recorded and transcribed verbatim. A pragmatic content thematic analysis was performed. To increase capacity for interpretation and analysis, we were guided by the principle of data triangulation. Results: Citizen-patient involvement in decision-making is more perceived as a theoretical idea than as a practical reality in healthcare organizations or in the health system. There is very little connection between citizen involvement structures or patient and user groups and telehealth leaders. For the respondents, citizen-patient involvement in telehealth could increase the accountability and transparency of decision-making, and make it more pragmatic within an innovation-driven health system. This involvement could also make citizens-patients ambassadors and promoters of telehealth, and improve the quality and organization of health services while ensuring they are more socially relevant. Challenges and constraints that were reported include the ambiguity of the “citizen-patient”, who should be involved and how, “claimant” citizen-patient, the risk of professionalization of citizen-patient involvement and the gap between decision time vs. time to involve the citizen-patient. Conclusions: This study provides a basis for future research on the potential of involving citizens-patients in telehealth. There is a great need for research on the issue of citizen-patient involvement as an organizational innovation (in terms of decision-making model). Research on the organizational predisposition and preparation for such a change becomes central. More efforts to synthesize and translate knowledge on public participation in decision-making in the health sector, particularly in the field of technology development, are needed. Clinical Trial: Not Applicable
Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential to effective treatment of a w...
Background: Children with gastrointestinal symptoms have a very high rate of anxiety and depression. Rapid identification of comorbid anxiety and depression is essential to effective treatment of a wide variety of functional gastrointestinal disorders. Objective: To determine patient and parent attitudes toward depression, anxiety, and mental health screening during gastroenterology (GI) visits, and to determine patient and parent preferences for communication of results and referral to mental health providers after a positive screen. Methods: Patient engagement methods were utilized to assess patient and parent preferences. Families participated in individual interviews and group activity sessions to provide feedback on the process for providing mental health screening and consultation in the pediatric GI clinic Results: Overall, patients and their parents found integrated mental health care to be acceptable in the subspecialty setting. Patients' primary concerns were for the privacy and confidentiality of their screening results. Both patients and their parents emphasized the importance of mental health services not interfering with the GI visit and collaboration between the GI physician, psychologist, and primary care provider. Conclusions: Patients and their families are open to integrated mental health care in the pediatric subspecialty clinic. The next phase of the DECADES Study will translate patient and parent preferences into an integrated mental health care system and test its efficacy in the pediatric GI office. Clinical Trial: NCT02773706