Journal of Participatory Medicine
Co-production in research and healthcare, technology for patient empowerment and fostering partnership with clinicians
Susan Woods, MD, MPH Matthew F Hudson, PhD, MPH
Susan Woods, MD, MPH
Matthew F Hudson, PhD, MPH
The JMIR Journal of Participatory Medicine is the leading peer-reviewed journal dedicated to advancing and disseminating science on the meaningful participation of individuals in research and care delivery, and the use of technology for patient and citizen empowerment.
Articles focus on co-production and participatory design in research and healthcare, developing and deploying technology for patient self-care, fostering patient-clinician partnerships, improving patient and caregiver experience, and citizen science.
The journal is fully open access, supporting a global community of scientists, educators, clinicians, advocates, and the public. We publish original research, reviews, viewpoints, case studies, and essays including those written by patients and caregivers. Extraordinary Lives articles highlight individuals the world has lost who served as exemplars of participatory medicine.
The journal is also the official journal of the Society for Participatory Medicine.
JMIR Journal of Participatory Medicine features a rapid and thorough peer-review process, professional copyediting, professional production of PDF, XHTML, and XML proofs (deposited in PubMed/PubMed Central). The Journal adheres to the same quality standards as all JMIR publications.
All articles published here are also cross-listed in the Table of Contents of JMIR, the world's leading medical journal in health sciences / health services research and health informatics.
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.
Over the past decade, a growing body of scientific evidence has demonstrated that community engagement in research leads to more relevant research, enhances the uptake of research findings, and improves clinical outcomes. Despite the increasing need for the integration of community engagement methodologies into the scientific inquiry, doctoral and master's level competencies in the field of psychiatry often lack dedicated training or coursework on community engagement methodologies.
The Journal of Participatory Medicine introduces Extraordinary Lives, a new journal section celebrating the voices and work of steadfast advocates of participatory medicine that we have lost. This inaugural essay spotlights Casey Quinlan, a patient activist who effectively used her humor and incisive analysis of health care to encourage others to strive for meaningful change. A first-generation “professional patient,” Casey served as a role model who inspired many to share their stories and achieve genuine partnerships in care delivery. A maker of “good trouble,” her voice and stance were part of her power and influence in disrupting the status quo. We present her fight for personal access to health data, her aspiration for personally customized evidence, and her drive for all people to control their health and their health care.
Owing to their low prevalence, rare diseases are poorly addressed in the scientific literature and clinical practice guidelines. Thus, health care workers are inadequately equipped to provide timely diagnoses, appropriate treatment, and support for these poorly understood conditions. These clinical tribulations are experienced as moral challenges by patients, jeopardizing their life trajectories, dreams, and aspirations.
Owing to the demographic changes in the elderly population worldwide, delivering coordinated care at home to multimorbid older adults is of great importance. Older adults living with multiple chronic conditions need information to manage and coordinate their care. eHealth can be effective for gaining sufficient information, communicating, and self-managing chronic conditions. However, incorporating older adults’ health preferences and ensuring active involvement remain challenging. More knowledge is needed to ensure successful participation and eHealth use in care coordination.
People who inject drugs are experiencing syndemic conditions with increasing risk of infection with hepatitis C (HCV) and HIV. However, rates of accessing HCV and HIV testing and treatment among people who inject drugs are low for various reasons, including the criminalization of drug use, which leads to a focus on treating drug use rather than caring for drug users. For many people who inject drugs, health care becomes a form of structural violence, resulting in traumatic experiences, fear of police violence, unmet needs, and avoidance of medical care. There is a clear need for novel approaches to health care delivery for people who inject drugs.
Premature infants are at increased risk of kidney-related complications, including acute kidney injury (AKI) and chronic kidney disease (CKD). The risk of CKD in prematurely born infants is underrecognized by health care teams and caregivers. Understanding how to communicate the risk of CKD to caregivers is essential for longitudinal clinical follow-up and adherence.
In the United Kingdom, women aged 50 to 70 years are invited to undergo mammography. However, 10% of invasive breast cancers occur in women aged ≤45 years, representing an unmet need for young women. Identifying a suitable screening modality for this population is challenging; mammography is insufficiently sensitive, whereas alternative diagnostic methods are invasive or costly. Robotic clinical breast examination (R-CBE)—using soft robotic technology and machine learning for fully automated clinical breast examination—is a theoretically promising screening modality with early prototypes under development. Understanding the perspectives of potential users and partnering with patients in the design process from the outset is essential for ensuring the patient-centered design and implementation of this technology.
Patient empowerment is an important concept and a movement toward person-centered care of patients with chronic conditions. Nevertheless, to date, most research on empowered patients or informal caregivers has been conducted from a narrow clinical perspective. Such research has mainly focused on how health care professionals can empower patients to increase self-care or compliance with treatment. Research on empowered patient and informal caregiver needs and self-empowering activities is scarce.