Journal of Participatory Medicine

Managing patients with multiple chronic comorbidities is complex and challenging within traditional healthcare systems due to the need for multidisciplinary expertise, longitudinal tracking, and coordination. The development of collaborative online platforms leveraging user-driven healthcare (UDHC) and medical cognition principles offers new avenues for addressing these complexities by facilitating remote, participatory, and evidence-informed case management.

Experiences of mental distress are considered difficult to communicate, particularly experiences of psychosis. Research indicates that the frequently used medical focus falls short in capturing the nuanced interpersonal dynamics that these altered states may involve. Psychosis may seem very different from a lived experience perspective than it does from a traditional psychiatric perspective. This calls for innovative lived experience–based methodologies. This paper presents the development and preliminary evaluation of a design prototype co-designed to strengthen the role of people experiencing psychosis in the care process and describes its design rationale.

Chronic stress in African American individuals is multilayered amid the context of experiences of racism and discrimination. Cortisol dynamic range (CDR) may be an indicator of chronic stress, but CDR is understudied in African American populations compared with White populations, and is hypothesized to differ by sex.

Advancements in diagnostic technologies for the evaluation of infectious disease complaints in the outpatient setting have improved the speed and accuracy of pathogen detection and created the opportunity for higher accuracy in treatment planning. The benefits of these advanced diagnostics insights can be optimized when coupled with robust shared decision-making between the patient and clinician during the clinical encounter. This manuscript describes the process for integration of results from molecular testing for respiratory tract infection into a shared decision-making framework. It also explores how this synergy may lead to improved patient outcomes, enhanced health care delivery, and more collaborative care, while enhancing diagnosis and treatment of respiratory infections in various clinical settings.

Dementia poses a significant challenge in India. The rising incidence rates, limited resources, and restricted clinician access have contributed to a staggering 90% gap in diagnosis and care. Conversational technology provides a natural user interface with the potential to promote the independence, well-being, and safety of people living with dementia at home. However, the feasibility of implementing such technology to support people living with dementia across diverse cultural and economic settings remains underexplored.

The prevalence and incidence of dementia are higher in migrants and those with low socioeconomic status (SES). Mobile health (mHealth) interventions offer a potentially scalable way to reduce dementia risk via risk factor modification.

Patients with inflammatory bowel disease have periods with flare-ups including abdominal pain, diarrhoea, bloody stools and systemic symptoms that may influence negatively on the patients’ quality of life. Hence, prompt and intensified treatment is often required, and patients need to pay attention to self-management, including easy access to healthcare professionals. Seeking support is essential in patients’ self-management and beneficial for their quality of life. However, patients may experience difficulties in gaining access to healthcare professionals by phone or email when needed. mHealth interventions have shown to support patients with flexible, timely and ongoing communication with healthcare professionals. However, the most prevalent functions of present apps for patients with inflammatory bowel disease are tracking disease symptoms and accessing information. Additionally, there has been limited patient and clinician involvement in the design and development of eHealth apps for patients with inflammatory bowel disease. Although it is emphasized that patients with inflammatory bowel disease should be involved to identify tools and functionalities that the patients find relevant and effective.

Communication of imaging results is increasingly directed to patients, but controversies remain regarding report communication from the perspectives of patients, ordering providers, and radiologists.

Preventing diabetes is a priority for governments and health systems worldwide. Artificial Intelligence (AI) has the potential to inform prevention and planning. But there is little guidance on how patients, caregivers, and communities are engaged in the AI lifecycle stages.

Patient engagement in research is the meaningful and active involvement of patient/caregiver partners (i.e., patients and their family/friends) in research priority-setting, conduct, and governance. With the proper support, patient/caregiver partners can inform every stage of the research cycle, but common barriers often prevent their full engagement.

The adoption of artificial intelligence (AI) in health care has outpaced education of the clinical workforce on responsible use of AI in patient care. Although many policy statements advocate safe, ethical, and trustworthy AI, guidance on the use of health AI has rarely included patient perspectives. This gap leaves out a valuable source of information and guidance about what responsible AI means to patients. In this viewpoint coauthored by patients, students, and faculty, we discuss a novel approach to integrating patient perspectives in undergraduate premedical education in the United States that aims to foster an inclusive and patient-centered future of AI in health care.

Public deliberation is a qualitative research method that has successfully been used to solicit lay people’s perspectives on health ethics topics, but questions remain as to whether this traditionally in-person method translates into the online context. The MindKind Study conducted public deliberation sessions to gauge the concerns and aspirations of young people in India, South Africa, and the United Kingdom in regard to a prospective mental health databank. This paper details our adaptations to and evaluation of the public deliberation method in the online context, especially in the presence of a digital divide.