Journal of Participatory Medicine

Artificial intelligence (AI) and large language models (LLMs) offer significant potential to enhance many aspects of daily life. Patients and caregivers are increasingly using AI for their own knowledge and to address personal challenges. The growth of AI has been extraordinary; however, the field is only beginning to explore its intersection with participatory medicine. For many years, the Journal of Participatory Medicine has published insights on tech-enabled patient empowerment and strategies to enhance patient-clinician relationships. This theme issue on Patient and Consumer Use of AI for Health to explore the use of AI for health from the perspective of patients and the public.

Surgical ward rounds (SWRs) are typically led by doctors, with limited involvement from key participants, including patients, family members, and bedside nurses. Despite the potential benefits of a more collaborative and person-centered approach, efforts to engage these stakeholders remain rare.

Smartphone apps can improve access to bipolar disorder (BD) care by delivering elements of effective psychological interventions, thereby promoting quality of life and reducing relapse risk and mood instability in BD. While many people with BD are interested in using publicly available mental health smartphone apps, without guidance, they risk selecting apps that are unsafe or ineffective.

Low retention and adherence increase clinical trial costs and timelines. Burdens associated with participating in a clinical trial contribute to early study termination. Electronic patient reported outcome (ePRO) tools reduce participant burden by allowing remote participation, and facilitate communication between researchers and participants. The Datacubed Health (DCH) mobile application is unique among ePRO platforms in its application of behavioral science principles (reward, motivation, identity, etc.) in clinical trials to promote engagement, adherence, and retention.

Newborn screening aims to identify babies affected by rare but serious genetic conditions. As technology advances, there is the potential to expand the newborn screening program following evaluation of the likely benefits and drawbacks. To inform these decisions, it is important to consider the family experience of screening and the views of the public. Engaging in public dialogue can be difficult. The conditions, screening processes, and associated moral and ethical considerations are complex.

Diabetic foot ulcers are common and costly. Most cases are preventable, although few interventions exist to reliably support patients in performing self-care. Emerging technologies are showing promise in this domain, although patient and health care provider perspectives are rarely incorporated into digital intervention designs.

Health authorities worldwide have invested in digital technologies to establish robust information exchange systems for improving the safety and efficiency of medication management. Nevertheless, inaccurate medication lists and information gaps are common, particularly during care transitions, leading to avoidable harm, inefficiencies, and increased costs. Besides fragmented health care processes, the inconsistent incorporation of patient-driven changes contributes to these problems. Concurrently, patient-empowerment tools, such as mobile apps, are often not integrated into health care professional workflows. Leveraging coproduction by allowing patients to update their digital shared medication plans (SMPs) is a promising but underused and challenging approach.

It remains unclear if there is agreement between physicians and patients on the definition of treatment success following orthopedic treatment. Clinical progress notes are generated during each health care encounter and include information on current disease symptoms, rehabilitation progress, and treatment outcomes.

Adolescents and young adults (AYA) with cystic fibrosis (CF) are at risk for deviating from their daily treatment regimen due to significant time burden, complicated daily therapies, and life stressors. Developing patient-centric, effective, engaging, and practical behavioral interventions is vital to help sustain therapeutically meaningful self-management.

Children with medical complexity represent a heterogeneous group of children with multiple chronic health care conditions. Caregivers of children with medical complexity experience a high intensity of caregiving that is often variable, extends across several networks of care, and often lasts for the entirety of the child’s life. The spillover, or indirect, economic impacts of caregiving are understudied in the context the family units of children with medical complexity. There have been recognized limitations to the sole use of quantitative methods when developing economic models of disease, because they lack direct caregiver voice and context of caregiving activities, and existing methods have been noted to be ableist.

Linguistic accommodation refers to the process of adjusting one’s language, speech, or communication style to match or adapt to that of others in a social interaction. It is known to be vital to effective health communication. Despite this evidence, there is little scientific guidance on how to design linguistically adapted health behavior interventions for diverse English-speaking populations. This study aims to document the strategies used to develop a culturally grounded cancer prevention intervention with the capabilities to linguistically accommodate to speakers of African American English (AAE). We describe the iterative process of developing a cancer prevention intervention with contributions of racially and linguistically diverse colleagues representing various community and institutional perspectives, including communication scientists, linguists, a community advisory board, professional voice talents, and institutional representatives for scientific integrity. We offer a detailed description of the successes and, in some cases, failures of strategies. Social stereotypes associated with AAE were prevalent at both institutional and community levels, resulting in unanticipated challenges and delays during intervention development. The diversity of linguistic, racial, and role identities within the message development team was integral to successfully addressing and identifying opportunities for process improvement. Language is a vital but often overlooked aspect of intervention development. Message designers should consider implicit social stereotypes that unintentionally shape linguistic choices. This study provides a novel overview of how various types of expertise and iterative message development processes contribute to successfully navigating cultural grounding when sensitive or stigmatized issues are salient.

The global shift toward plant-based diets has been increasing, with more people making the transition for various reasons. In vulnerable subgroups such as older adults, the transition to plant-based diets deserves attention due to the potentially detrimental consequences of lower protein quantity and quality.