Journal of Participatory Medicine

Peer specialists are hired, trained, and accredited to share their lived experience of psychiatric illness to support other similar individuals through the recovery process. There are limited data on the role of peer specialists in suicide prevention, including their role in intervention development.

A growing interest in engaging communities in the development of health care services and communities has not automatically led to progress or consensus as to how to engage communities successfully, despite the evidence base showing how to leverage enablers and alleviate barriers.

Challenging encounters in health care professions, including in dentistry, are relatively common. Challenging encounters can be defined as stressful or emotional situations involving patients that could impact both treatment outcomes and patients’ experiences. Through written web-based reviews, patients can share their experiences with health care providers, and these posts can be a useful source for investigating patient satisfaction and their experiences of challenging encounters.

Patient-accessible electronic health records (PAEHRs) are assumed to enhance the quality of care, expressed in terms of safety, effectiveness, timeliness, person centeredness, efficiency, and equity. However, research on the impact of PAEHRs on the perceived quality of care among parents, children, and adolescents is largely lacking. In the Netherlands, a PAEHR (Iuvenelis) was developed for preventive child health care and youth care. Parents and adolescents had access to its full content, could manage appointments, ask questions, and comment on written reports.

Effective primary care necessitates follow-up actions by the patient beyond the visit. Prior research suggests room for improvement in patient adherence.

Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire (“We would like to know you”) consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement.

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.