Patients with chronic illnesses are often praised for taking charge of their own healthcare, researching treatments, joining online communities, and becoming informed partners in medical decision-making. But a new study from Bar-Ilan University argues that this growing "patient empowerment" often comes at a hidden cost.
Drawing on in-depth interviews with people living with Parkinson's disease, researchers found that many patients do not actively choose to become experts in their illness. Instead, they feel compelled to do so because healthcare systems leave them with little alternative.
Published in Social Science & Medicine – Qualitative Research in Health , the study introduces a new concept, called "forced agency", to describe the emotional, intellectual and practical burden patients face as they search for reliable medical information, evaluate conflicting advice, coordinate their own care, and advocate for themselves within increasingly complex healthcare systems.
The research was led by Nadav Koren and Prof. Shlomo Guzmen-Carmeli of Bar-Ilan University's Department of Sociology and Anthropology, together with Prof. David A. Rier, from the Department of Sociology and Anthropology at Bar-Ilan.
Rather than experiencing empowerment, many participants described becoming reluctant experts as a necessity. Patients reported spending countless hours researching medications, comparing medical opinions, participating in online support groups, and preparing extensively for medical appointments because consultation times were too short and information often insufficient.
One participant summarized the experience by saying: "I feel like a sick Superman." The phrase captures what the researchers identify as the paradox of modern healthcare: patients are expected to take increasing responsibility for managing their illness while simultaneously coping with the physical and emotional challenges of chronic disease.
The researchers argue that this creates what they call an "epistemic burden", the exhausting work of acquiring and evaluating medical knowledge without formal medical training. Beyond managing symptoms and treatments, patients become responsible for making complex healthcare decisions, often while navigating contradictory information and fragmented healthcare services.
"Our findings challenge the common assumption that greater patient engagement is always empowering," said Prof. Guzmen-Carmeli. "Many patients become highly knowledgeable not because they want to, but because they feel they have no other choice. The responsibility itself becomes another burden of living with chronic illness."
Although the study focused on Parkinson's disease, the researchers believe the findings are relevant to many chronic conditions requiring long-term self-management, including diabetes, multiple sclerosis, and other neurodegenerative diseases.
The researchers recommend that healthcare systems recognize this hidden burden by expanding patient support services, improving access to reliable medical information, strengthening patient navigation programs, and allowing clinicians more time to address patients' questions during consultations.
"Our goal is not to discourage patient engagement," the researchers note. "Rather, healthcare systems should support patients' autonomy without abandoning them to navigate increasingly complicated medical landscapes on their own."
Social Science & Medicine
13-Jun-2026