Journal of Participatory Medicine

For those of us who believe deeply in a collaborative relationship between patients and doctors, the chaos created by the COVID-19 pandemic has brought an uncomfortable question to the fore: Is participatory medicine still relevant during a pandemic? Drawing liberally upon the Jewish tradition of Talmudic reasoning, I would like to offer 3 considered replies: “Yes,” “no,” and “it depends.” Sometimes, patients may have no choice but to cede control to medical professionals, even though patients are still the experts on their own lives. Other times, the shared control of participatory medicine is both an ethical and clinical imperative. However, as the worldwide toll exacted by COVID-19 has made us grimly aware, no one is really in control. That is why, in these uncertain times, the path forward requires maintaining mutual trust between health care providers and patients, whatever the circumstances. After all, it is our bodies and our selves at stake.

Although fever is considered a sign of infection, many individuals with primary immunodeficiency (PI) anecdotally report a lower-than-normal average body temperature on online forums sponsored by the Immune Deficiency Foundation (IDF). There is limited knowledge about the average body temperature and fever response in PI.

Peer support specialists offering mental health and substance use support services have been shown to reduce stigma, hospitalizations, and health care costs. However, as peer support specialists are part of a fast-growing mental health and substance use workforce in innovative integrated care settings, they encounter various challenges in their new roles and tasks.

Giving patients access to their medical records (ie, open health records) can support doctor-patient communication and patient-centered care and can improve quality of care, patients’ health literacy, self-care, and treatment adherence. In Germany, patients are entitled by law to have access to their medical records. However, in practice doing so remains an exception in Germany. So far, research has been focused on organizational implementation barriers. Little is known about physicians’ attitudes and perspectives toward opening records in German primary care.

Widespread adoption, use, and integration of patient-facing technologies into the workflow of health care systems has been slow, thus limiting the realization of their potential. A growing body of work has focused on how best to promote adoption and use of these technologies and measure their impacts on processes of care and outcomes. This body of work currently suffers from limitations (eg, cross-sectional analyses, limited patient-generated data linked with clinical records) and would benefit from institutional infrastructure to enhance available data and integrate the voice of the patient into implementation and evaluation efforts.

We describe the methodological dimensions of community-based participatory research through a description of study design, youth engagement, and methods/processes in the cocreation of knowledge within a Canadian study, the Bipolar Youth Action Project. This collaborative partnership—carried out by a team composed of academic, community, and youth partners—was designed to investigate self-management and wellness strategies for young adults living with bipolar disorder.

While the transition toward digitalized health care and service delivery challenges many publicly and privately funded health systems, patients are already producing a phenomenal amount of data on their health and lifestyle through their personal use of mobile technologies. To extract value from such user-generated data, a new insurance model is emerging called Pay-As-You-Live (PAYL). This model differs from other insurance models by offering to support clients in the management of their health in a more interactive yet directive manner. Despite significant promises for clients, there are critical issues that remain unaddressed, especially as PAYL models can significantly disrupt current collective insurance models and question the social contract in so-called universal and public health systems. In this paper, we discuss the following issues of concern: the quantification of health-related behavior, the burden of proof of compliance, client data privacy, and the potential threat to health insurance models based on risk mutualization. We explore how more responsible health insurance models in the digital health era could be developed, particularly by drawing from the Responsible Innovation in Health framework.

Patient and family participation in guideline development is neither standardized nor uniformly accepted in the guideline development community, despite the 2011 Institute of Medicine’s Guidelines We Can Trust and the Guideline International Network’s GIN-Public Toolkit recommendations. The Cystic Fibrosis Foundation has included patients and/or family members directly in guideline development since 2004. Over time, various strategies for increasing patient and family member participation have been implemented. Surveys of recent patient/family and clinical guidelines committee members have shown that inclusion of individuals with cystic fibrosis and their family members on guidelines committees has provided insight otherwise invisible to clinicians.

The gold standard management of aortic dissection, a life-threatening condition, includes multidisciplinary approaches. Although mental distress following aortic dissection is common, evidence-based psychosocial interventions for aortic dissection survivors are lacking.

Physician–patient collaboration was recognized as a critical core of participatory medicine more than a century ago. However, the subsequent focus on scientific research to enable cures and increased dominance of physicians in health care subordinated patients to a passive role. This paternalistic model weakened in the past 50 years—as women, minorities, and the disabled achieved greater rights, and as incurable chronic diseases and unrelieved pain disorders became more prevalent—promoting a more equitable role for physicians and patients. By 2000, a shared decision-making model became the pinnacle for clinical decisions, despite a dearth of data on health outcomes, or the model’s reliance on single patient or solo practitioner studies, or evidence that no single model could fit all clinical situations. We report about a young woman with intractable epilepsy due to a congenital brain malformation whose family and medical specialists used a collaborative decision-making approach. This model positioned the health professionals as supporters of the proactive family, and enabled them all to explore and co-create knowledge beyond the clinical realm. Together, they involved other members of the community in the decisions, while harnessing diverse relationships to allow all family members to achieve positive levels of health, despite the resistance of the seizures to medical treatment and the incurable nature of the underlying disease.

Although some health care market reforms seek to better engage consumers in purchasing health care services, health consumer behavior remains poorly understood.

Skin and soft tissue infections (SSTIs) due to community-acquired methicillin-resistant Staphylococcus aureus (MRSA) can lead to a number of significant known medical outcomes including hospitalization, surgical procedures such as incision and drainage (I&D), and the need for decolonization procedures to remove the bacteria from the skin and nose and prevent recurrent infection. Little research has been done to understand patient and caregiver-centered outcomes associated with the successful treatment of MRSA infection.