Journal of Participatory Medicine

Participatory design is an increasingly common informatics method to engage intended audiences in the development of health-related resources. Participatory design is particularly helpful for developing information visualizations that aim to improve health outcomes by means of improved comprehension, communication, or engagement, and subsequent behavior changes. Existing literature on participatory design lacks the practical details that influence the success of the method and does not address emergent issues, such as strategies to enhance internet-based data collection. In this tutorial, our objective is to provide practical guidance on how to prepare for, conduct, and analyze participatory design sessions for information visualization. The primary audience for this tutorial is research teams, but this guide is relevant for organizations and other health professionals looking to design visualizations for their patient populations, as they can use this guide as a procedural manual. This start-to-finish guide provides information on how to prepare for design sessions by setting objectives and applying theoretical foundations, planning design sessions to match project goals, conducting design sessions in different formats with varying populations, and carrying out effective analysis. We also address how the methods in this guide can be implemented in the context of resource constraints. This tutorial contains a glossary of relevant terms, pros and cons of variations in the type of design session, an informed consent template, a preparation checklist, a sample design session guide and selection of useful design session prompts, and examples of how surveys can supplement the design process.

In bipolar disorder (BD), mania may be self-induced by manipulation of specific precipitants, as reported in case studies. Another potential source of information on the self-induction of mania is the online postings of users with lived experience of mania.

The COVID-19 pandemic was an unprecedent challenge to public health systems, with 95% of cases in Quebec sent home for self-isolation. To ensure continuous care, we implemented an intervention supported by a patient portal (Opal) to remotely monitor at-home patients with COVID-19 via daily self-reports of symptoms, vital signs, and mental health that were reviewed by health care professionals.

Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation. However, this online modality has not been frequently evaluated.

The patient-provider relationship in obstetrics and gynecology (OBGYN) is uniquely complex due to the sensitive nature of examinations and topics. Patients often prefer health care providers who share similar racial, ethnic, gender, or linguistic backgrounds, particularly in sensitive health care situations, to improve communication and comfort, though historically, specific gender preferences for OBGYNs have not been evident.

Recovery colleges are service user–led educational interventions aiming at empowering people with mental health issues and promoting recovery through peer learning. Despite the increasing interest in recovery colleges in recent years and the demonstrated beneficial effects for users, there is limited research addressing aspects that influence their implementation. This knowledge is necessary for the successful integration of such interventions in various contexts.

The success of big data initiatives depends on public support. Public involvement and engagement could be a way of establishing public support for big data research.

Chlamydia remains prevalent worldwide and is considered a global public health problem. However, testing rates among young sexually active people remain low. Effective clinical management relies on screening asymptomatic patients. However, attending face-to-face consultations of testing for sexually transmitted infections is associated with stigmatization and anxiety. Self-testing technology (STT) allows patients to test themselves for chlamydia and gonorrhea without the presence of health care professionals. This may result in wider access to testing and increase testing uptake. Therefore, the sexual health clinic at Odense University Hospital has designed and developed a technology that allows patients to get tested at the clinic through self-collected sampling without a face-to-face consultation.

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.