‘From patient centred to people powered: autonomy on the rise‘ 10 February 2015
Dave deBronkart, speaker, policy adviser, and co-chair, Society for Participatory Medicine, 17 Grasmere Lane, Nashua, NH 03063, US; email@example.com
Analysis Spotlight: Patient Centred Care, BMJ 2015;350:h148
“Following in the path of feminists and civil rights leaders, informed patients are building a progressive social movement to improve medical care. Dave deBronkart says medicine should let patients help improve care, share responsibility, and think for themselves
The practice of medicine is intellectually demanding: it requires specialised skills and decades of training and experience. Understandably, the accepted model that has guided us for centuries is “doctor knows best.” As recently as 2001 the American Medical Association proposed this new year’s resolution to patients:
“Only your physician has the necessary experience and expertise to diagnose and treat medical conditions. Trust your doctor, not a chat room.”
A decade later pronouncements from the Institute of Medicine, the Mayo Clinic, the World Health Organization, and others suggest that patients—individuals without specialised training—should be treated as genuine, value contributing partners in the work of medicine.
If the American Medical Association in 2001 and the Belgian government (which ran a paternalistic “Don’t google” your health problems campaign last year5) are right, then the Institute of Medicine and WHO have gone mad. But I believe the opposite is true and that our thinking must change.
I have recently been appointed the 2015 visiting professor in internal medicine at the Mayo Clinic, simply on the basis of my experience with my disease and my subsequent work to change medicine’s thinking so others might benefit. I don’t reject physicians (they saved my life), and I don’t assert that patients know everything. I do know first hand that patients can truly add value, and explain why in my book, Let Patients Help.
A growing movement, exemplified by the Society for Participatory Medicine (www.ParticipatoryMedicine.org) and the annual Stanford Medicine X conference (http://medicinex.stanford.edu/), asserts that patients and clinicians must collaborate. Central to its belief is that whereas the physician brings training and clinical expertise, patients bring their life experience, their deep investment in the outcome of their case, their skills and resilience, and a unique perspective on needs and priorities. The movement recognises patient autonomy as a valid priority and patients’ hearts and minds as essential contributions to the best possible care. We believe that medicine cannot achieve its potential if it ignores the voice of thinking patients.
This movement is not anti-physician, it’s about partnership. When I had cancer diagnosed, I received the very best care I could find, but I didn’t sit back and expect to be saved: I joined an online patient community, and my oncologist says that members’ practical advice may have helped me to tolerate the treatment that saved my life. What if I’d followed the AMA’s advice and stayed away from chat rooms?
The internet has let many such “e-patients” (empowered, engaged, equipped, enabled) be heard by other patients, physicians, and policy makers (box). Dozens have served as “e-patient scholars” and advisers to MedX and other forums. In so doing they are growing a new reality, contributing to improved care for themselves and others. They are creators of a social movement, a shift in roles as profound as women’s liberation, racial equality, gay rights, and disability rights …