Journal of Participatory Medicine

This reflective article, written collaboratively by 4 people living with multiple sclerosis (MS)—Johanna Hising DiFabio, Meredith O’Brien, Jennifer Southard, and Danny van Leeuwen—with Mary Hennings of the Society for Participatory Medicine, distills insights shared at a March 2025 event cohosted with Northeastern University’s Bouvé College of Health Sciences. The panelists speak as experts on their own lived experience, tracing the arc from diagnosis to what they call “optimal living” with a complex, unpredictable disease. The piece begins with the diagnostic journey itself, describing a “double trauma”: the anguish of unexplained physical decline before diagnosis, followed by the weight of confronting a confirmed chronic illness. The authors argue that how clinicians deliver and support a diagnosis determines whether patients end up isolated or drawn into genuine partnership with their care team. A central theme is the search for the right clinician fit—not just competence, but shared communication style and mutual respect for the patient’s expertise in their own life. The authors describe practices that support this, such as setting the visit agenda in advance through patient portals, and stress that patient engagement styles vary: some patients want deep involvement in research, while others prefer to delegate, but all need a clinician who genuinely listens. The article expands the notion of a care team beyond medical clinicians, describing three layers: the medical core, a complementary team (bodywork, movement, nutrition specialists), and a personal network of family and friends providing emotional support. It also names systemic frictions, like patients having to relay information among clinical specialists who don’t communicate with each other. A recurring message is resisting being reduced to the disease. The authors describe both the comfort and sting of comments like being told they “don’t look sick.” They also share personal strategies for preserving identity and quality of life, from adapting a musical instrument to accommodate physical limitations, to writing and publishing patient narratives, to using organizational resources like the National MS Society to navigate research and advocacy. The article closes with practical counsel for newly diagnosed patients: stay engaged, insist on true clinical partnership, build a broad support ecosystem, and protect the personal choices that give life meaning. It affirms the core principle of participatory medicine—that patients and clinicians grow together, with the patient retaining ownership of their own body and life.

Effective communication is essential for high-quality care, yet in walk-in clinics, patients often have limited time to prepare, and physicians face challenges in understanding patients’ needs due to lack of prior contact. To address this, a consultation preparation sheet (CPS) was developed to help patients articulate their symptoms, concerns, and expectations.

Dravet syndrome is a complex developmental and epileptic encephalopathy characterized by treatment-resistant seizures and multiple comorbidities that significantly affect quality of life. Traditional clinic-based assessments often fail to capture real-world functional abilities and behavioral changes.

Childhood vaccination rates are declining, and more parents are becoming hesitant about vaccinating their children. Higher levels of vaccine hesitancy occur among parents with lower levels of educational attainment, who are also likely to have lower levels of health literacy.

Recovery colleges (RCs) facilitate peer-supported learning communities where people experiencing mental disruption work on recovery. How recovery processes unfold, especially within RCs, remains insufficiently understood.

Recovery colleges (RCs) provide users of mental health services with self-management and coping skills, along with actions to promote social inclusion and reduce stigma. Research shows that recovery principles in mental health have the potential to improve services, but are poorly implemented. Better knowledge and understanding of RCs among mental health staff might help in addressing this challenge.

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The line between tool and companion was once obvious, but conversational AI is blurring it in ways few researchers anticipated. Large language model chatbots and purpose-built AI companion agents are now used by millions of people every day. They are not being used to simply retrieve information but, instead, to offer emotional support, help process personal distress, and sustain what many describe as genuine relationships. Research puts the scale of this shift in sharp relief as nearly half (48.7%) of individuals with self-reported mental health concerns report having used a large language model for mental health support or therapy-related purposes. This Viewpoint argues that these uses are best understood through 3 unique but overlapping relational frames: AI as a therapist substitute, AI as a companion or confidant substitute, and AI as a romantic partner substitute. Drawing on empirical literature across digital mental health, psychology, communication, and human-computer interaction and grounded in the values of participatory medicine, this paper examines why people turn to AI for these intimate purposes; what they appear to gain; and what clinicians, designers, developers, and policymakers should examine more carefully as the practice evolves. The picture that emerges is neither straightforwardly optimistic nor dismissive. Therapeutic chatbots can produce real symptom reduction for users; AI companionship can ease loneliness in genuine, if bounded, ways; and the emotional relief some people experience in these interactions is not an artifact of naivety. But the same systems that lower the barriers to disclosure also lower the barriers to harm. AI chatbots regularly hallucinate clinical guidance, validate dysfunctional beliefs, handle crises without accountability, and may cultivate the very isolation they seek to relieve. Responsible integration requires something more demanding than a disclaimer. Instead, it requires transparent design, thoughtful escalation pathways, ongoing evaluation, and a commitment to the human connection that participatory medicine places at the center of good care.

AI has become increasingly used in mental health care for applications such as diagnosis, monitoring, and treatment support. These include tools like clinician support systems, large language models, and conversational agents used to augment psychotherapy and clinical decision-making. While prior research suggests potential benefits of and concerns with AI, little is known within the domain of obsessive-compulsive disorder (OCD). Given the expanding role of AI in psychiatry, understanding these perspectives is essential to ensuring AI implementation aligns with patient priorities and values.

Palliative and end-of-life care (PEoLC) systems are expanding across services, settings, and stakeholders, increasing their complexity and the need for systemic understanding to support patient outcomes and service delivery. Hospice care is central to the future of PEoLC, as hospices provide holistic services and engage diverse stakeholders. Participatory system mapping offers a way to collectively understand and visualize complex dynamics with those who live and work within these systems.

Generative artificial intelligence (GenAI) tools are widely accessible to the public, who are engaging with them for a wide range of health care applications. Existing research has focused predominantly on clinician-facing adoption. Far less is known about how patients and family members use GenAI tools, particularly in rare disease contexts, where diagnostic delay, limited specialist access, and unmet informational needs are common.

Virtual research has emerged as a promising and convenient approach. This study investigates the experiences and challenges faced by patients with chronic respiratory diseases who participated in a virtual research study.