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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.
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Background: Major depressive disorder (MDD) is a common and burdensome condition. Clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objecti...
Background: Major depressive disorder (MDD) is a common and burdensome condition. Clinical understanding of MDD is shaped by current research, which lacks insight into the patient perspective. Objective: This two-part study aimed to generate data from PatientsLikeMe (PLM), an online patient network, on the perception of cognitive symptoms and how they are prioritized in MDD. Methods: A retrospective data analysis (Phase 1) drew data from the PLM community with self-reported MDD. Information on patient demographics, comorbidities, self-rated severity of MDD, treatment effectiveness, and specific symptoms of MDD was analyzed. A prospective electronic survey (Phase 2) was emailed to longstanding and recently active members of the PLM MDD community. Phase 1 analysis informed the objectives of the Phase 2 survey, which were to determine symptom perception and prioritization, cognitive symptoms of MDD, residual symptoms, and medication effectiveness. Results: In study 1 (N=17,166), cognitive symptoms were frequently reported, including “severe” difficulty concentrating (28%). Difficulty concentrating was reported even among patients with no/mild depression (80%) and patients who considered their treatment successful (17%). In a second study (N=2525), 23% (118/508) cited cognitive symptoms as a treatment priority. Cognitive symptoms correlated with depression severity, including difficulty making decisions, concentrating, and thinking clearly (rs=0.32, 0.36, and 0.34, respectively). Cognitive symptoms interfered with meaningful relationships and daily life tasks and had a profound impact on patients’ ability to work and to recover from depression. Conclusions: Patients acknowledge that cognitive dysfunction in MDD limits their ability to recover fully and return to a normal level of social and occupational functioning. Further clinical understanding and characterization of MDD regarding symptom prioritization and relapse risk due to residual cognitive impairment are required to help patients to return to normal cognitive function and aid their overall recovery. Clinical Trial: New England Institutional Review Board exemption number: 15-349
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Background: When health service providers (HSP) plan to develop ehealth resources for health service users (HSU), the latter’s involvement is essential. However, typical HSP, HSU, and technology dev...
Background: When health service providers (HSP) plan to develop ehealth resources for health service users (HSU), the latter’s involvement is essential. However, typical HSP, HSU, and technology developers engaged to produce the resources lack expertise in participatory design methodologies suited to the ehealth context. Furthermore, it can be difficult to identify an established method to use, or how to work stepwise through any particular method. Objective: We sought to summarise the evidence about which methods are most effective and efficient to engage HSU in the development of ehealth resources. Methods: We systematically reviewed accounts of participatory ehealth development projects from 2006 to 2016, in nine bibliographic databases. Studies were assessed for methodological rigour, and selected studies were analysed to explore what types of ehealth resources have been developed using this methodology, which frameworks could be applied throughout the development lifecycle, whether HSU preferences for one method or another had been reported, and what theories supported the intentions of the various projects. Results: The key participatory approaches mentioned in studies were: User Centred Design; CeHRes Roadmap; Medical Research Council (MRC) Guide to Developing and Evaluating Complex Interventions; International Patient Decision Aid Standards (IPDAS) Collaboration and Participatory Action Research (PAR) Framework. Participatory approaches were reported to improve accessibility, engagement, health literacy and usability. Motivation, empowerment and behaviour change theories were included in some ehealth development to improve ongoing engagement with HSU. Conclusions: Only 30 studies out of 603 gave rigorous accounts of their methodology. The majority of studies referred to using participatory design methods without reference to any particular named framework or processes. The lack of formalism in this field of research provides weak direction about good practice in ehealth development projects, and the inconsistency hinders building a stronger evidence base about what methods work well and why in this type of healthcare activity. The dilemma faced by HSPs to ensure meaningful HSU engagement throughout the ehealth development and evaluation is challenged by available resources. In health, evidence-based practice requires a number of years to be established. In the development of the ehealth technology the medium is changing rapidly and new innovations can alter the face of engagement. There is an urgency to develop a framework that supports a participatory design which can be cost and time efficient and meet the criteria of good practice. Clinical Trial: PROSPERO 2017: CRD42017053838