Journal of Participatory Medicine

Worldwide, there are an estimated 55 million people living with dementia, with an estimated cost to society of US $1.3 trillion a year. These numbers are predicted to rise, with the dementia population doubling every 20 years, reaching an estimated 152 million by 2050. There is currently no cure for dementia, with the condition having a significant impact on people’s independence and quality of life (QoL). It is therefore vital that people living with dementia are given the support that helps them to manage these impacts and optimizes their QoL. To do this, a more personalized and detailed understanding of a patient’s daily life is needed. Patient-reported outcome measures (PROMs) have long been associated with significant benefits in other domains, though the use of PROMs in routine dementia care is lacking. Factors such as platform design, literacy, language proficiency, and physical and mental capability can all severely impact the ability of people living with dementia to complete PROMs routinely.

In the field of patient monitoring, there often remains a gap between clinical needs and the monitoring technologies available from industry. To conquer this, the Patient Monitoring Roundtable (PMRT) live event series offers a sustainable and structured platform for innovation through focused small-group discussions, prioritizing deep engagement among stakeholders. By establishing a dynamic, low-barrier forum, the PMRT aims to serve as a thought leadership platform in patient monitoring and digital health, driving continuous improvement and shaping the future of health care technology.

Understanding patient educational requirements for care transitions is crucial for ensuring safe and effective care for patients with multiple chronic conditions (MCCs).

Rural and isolated communities, such as Culebra, Puerto Rico, face significant health care challenges due to geographic isolation, limited medical resources, and socioeconomic disadvantages. Chronic diseases, particularly diabetes and hypertension, are highly prevalent and contribute to poor health outcomes. Telehealth services (THS) and community health workers (CHWs) have been identified as effective interventions for improving health care access in underserved areas. This study is grounded in the principles of community-oriented primary care, which emphasizes the integration of primary care and public health for a defined community, and positions the combination of CHWs and THS as a practical application of this model in an isolated island setting.

Patient and public involvement (PPI) is crucial for enhancing research quality and relevance and addressing health inequalities. PPI ensures that studies tackle relevant and meaningful questions, as there is a recognized need by the research community to document and share PPI studies to advance the field and encourage the adoption of such activities.

Despite increasing patient involvement in medical education, research has predominantly focused on involvement in small-group teaching. This study explored what it means to actively and meaningfully involve patients in large-group, lecture-based teaching while avoiding historical paternalistic approaches.

Artificial intelligence (AI) is increasingly integrated into everyday life. Yet in health care, patients and families are challenged to understand how AI may be helpful. As a result, real-world patient stories remain scarce. Generative AI can serve as a learning partner to help patients interpret complex medical information, prepare for appointments, and navigate care decisions. A case study is presented from the perspective of a caregiver and a clinician colleague, describing how one family used generative AI (ChatGPT; OpenAI) to better understand test results, possible diagnoses and treatments, prepare for visits, and summarize and share information with an extended care team. This paper also shares tips and lessons learned with others navigating similar health care challenges. A first-hand account of family interactions with ChatGPT is described during a period between diagnostic imaging and surgical consultation. Real-world use of AI by a caregiver is showcased, including strategies used to understand and summarize health record data, querying AI using medical documents, and resulting actions taken by the family. Using the case study as a springboard, the authors provide a separate section to share lessons learned for patients and caregivers in their use of AI. The family reported benefits of AI, including the ability to comprehend health information by translating medical records into patient-friendly language; to emotionally process and prepare for visits; to research diagnoses and treatments; to streamline communication with care teams by using concise patient summaries; and to feel more empowered to take timely, informed action. Generative AI can serve as a valuable companion tool for patients and caregivers navigating complex medical information. By translating results, providing education about diagnoses and treatment options, and helping prepare for visits, AI may reduce care delivery delays and raise family confidence in decision-making. However, limitations exist, and patients and caregivers need to validate AI output to ensure accuracy and privacy.

Patients undergoing hematopoietic cell transplant (HCT) and their caregivers are under a significant amount of stress throughout the HCT process with fear of disease recurrence, graft failure, and many other HCT-related complications. However, the needs and perspectives of patients undergoing HCT and their caregivers as dyadic units over the peri-HCT period are continuing to be studied and are an evolving field of research.

The United States faces a persistent maternal mortality crisis, with rates far higher than those in other high-income nations. The mortality rate among Black women is more than 3 times that among White women. Traditional data visualizations, such as bar and line charts, often emphasize aggregate outcomes, masking inequities and failing to reflect patient-level experiences.

The Veterans Health Administration is promoting patient-reported outcome measure (PROM) collection for measurement-based mental health care. Understanding veteran preferences about how and when to complete PROMs is critical to support their implementation.

Recruiting and retaining adequate numbers of eligible participants remain the key challenges in clinical research. Understanding the factors associated with participants’ motivations is essential to support recruitment efforts, reduce early withdrawals, and consolidate commitment. The Oxford University Clinical Research Unit conducted a longitudinal study, named the SEED project, with a cohort of first- and third-year students at the University of Medicine and Pharmacy at Ho Chi Minh City, Vietnam.

Black and Hispanic/Latino communities experience disproportionate chronic pain and are underrepresented in pain research. Transcutaneous auricular vagus nerve stimulation (taVNS) and transcranial magnetic stimulation (TMS) are promising tools for pain management. Therefore, it is critical to ensure that research using these tools engages all communities to make research findings more generalizable and reach all who may benefit. Lack of diversity in the research workforce itself is a key barrier to improving Black and Hispanic/Latino representation in pain research, and video-enhanced recruitment and consenting may be a useful tool to better engage Black and Hispanic/Latino communities.