Journal of Participatory Medicine

Engaging patients and the public in clinical practice guideline (CPG) development is believed to contribute significantly to guideline quality, but the advantages of the various co-design strategies have not been empirically compared, making it difficult to choose one strategy over another.

As an important transition stage in human development, adolescence is a critical window for vaping prevention. There is a substantial gap in communication research on vaping prevention among racial and ethnic minority groups. Their representation is essential to develop, implement, and disseminate innovative and effective interventions for vaping prevention.

The exponential growth of health information technology has the potential to facilitate community engagement in research. However, little is known about the use of health information technology in community-engaged research, such as which types of health information technology are used, which populations are engaged, and what are the research outcomes.

Patient and public involvement (PPI) in health research is an area of growing interest. Several studies have examined the use and impact of PPI in knowledge syntheses (systematic, scoping, and related reviews); however, few studies have focused specifically on the patient or public coauthorship of such reviews.

Co-production of health and care involving patients, families of patients, and professionals in care processes can create joint learning about how to meet patients’ needs. Although barriers and facilitators to co-production have been examined previously in various health care contexts, the preconditions in Swedish chronic cardiac care contexts are yet to be explored. This study is set in the health system of the Swedish region of Jönköping County and is part of system-wide efforts to promote better health for persons with heart failure (HF).

Sharing clinical trial data can provide value to research participants and communities by accelerating the development of new knowledge and therapies as investigators merge data sets to conduct new analyses, reproduce published findings to raise standards for original research, and learn from the work of others to generate new research questions. Nonprofit funders, including disease advocacy and patient-focused organizations, play a pivotal role in the promotion and implementation of data sharing policies. Funders are uniquely positioned to promote and support a culture of data sharing by serving as trusted liaisons between potential research participants and investigators who wish to access these participants’ networks for clinical trial recruitment. In short, nonprofit funders can drive policies and influence research culture. The purpose of this paper is to detail a set of aspirational goals and forward thinking, collaborative data sharing solutions for nonprofit funders to fold into existing funding policies. The goals of this paper convey the complexity of the opportunities and challenges facing nonprofit funders and the appropriate prioritization of data sharing within their organizations and may serve as a starting point for a data sharing toolkit for nonprofit funders of clinical trials to provide the clarity of mission and mechanisms to enforce the data sharing practices their communities already expect are happening.

Patient-centered outcomes research (PCOR) engages patients as partners in research and focuses on questions and outcomes that are important to patients. The COVID-19 pandemic has forced PCOR teams to engage through web-based platforms rather than in person. Similarly, virtual engagement is the only safe alternative for members of the cystic fibrosis (CF) community, who spend their lives following strict infection control guidelines and are already restricted from in-person interactions. In the absence of universal best practices, the CF community has developed its own guidelines to help PCOR teams engage through web-based platforms.

The COVID-19 pandemic has led to a global mental health crisis, highlighting the need for a focus on community-wide mental health. Emotional CPR (eCPR) is a program and practice developed by persons with a lived experience of recovery from trauma or mental health challenges to train community members from diverse backgrounds to support others through mental health crises. eCPR trainers have found that eCPR may promote feelings of belonging by increasing supportive behaviors toward individuals with mental health problems. Thus, clinical outcomes related to positive and negative affect would improve along with feelings of loneliness.

The rise in pediatric obesity and its accompanying condition, type 2 diabetes (T2D), is a serious public health concern. T2D in adolescents is associated with poor health outcomes and decreased life expectancy. Effective diabetes prevention strategies for high-risk adolescents and their families are urgently needed.

In a previous study, participation in a 16-week reverse integrated care and group behavioral and educational intervention for individuals with diabetes and serious mental illness was associated with improved glycemic control (hemoglobin A_1c) and BMI. To inform future implementation efforts, more information about the effective components of the intervention is needed.

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.