Next in our “Why I Joined” series is Victor Montori, MD of the Mayo Clinic. My wife and I met him in May; he’s high energy, with boundless optimism. And as you’ll see, he feels very strongly about patients being at the center of healthcare.
The civil rights movement has not finished its job. In the list of people who are routinely oppressed today we find patients. I have come to understand that physicians, and I am one, oppress patients not willingly, not deliberately, not intentionally. Oppression of patients is also the result of actions by healthcare administrators, payers, pharma, device manufacturers, and governments, perhaps often unwillingly. At its simplest, oppression (and coercion, and injustice) results from patients staying in the dark about their own health state, their available options and the relative merits of each, the extent to which services can flexibly meet their needs, and the extent to which uncertainty, ignorance, and impotence remain part and parcel of modern medicine.
We sometimes keep patients in the dark about these things, because we may be in the dark as well. Sometimes we know implicitly that services can be rendered differently to different people (think about the extent to which, if you are related to a health professional, you decide or not to disclose this relationship to other health personnel when you seek services). Sometimes we have interest in keeping things the way they are (think about physician and patient-blogger relationships with big pharma). Sometimes we can’t know better because the research process that should generate new knowledge is aimed at regulatory approval and market share, not at meeting existing and latent needs of patients. Sometimes, the translation of research that could make a big difference in the efficacy and safety of health services is not prioritized because it is difficult to express its value, if not for an improve patient experience. Sometimes patients are oppressed unwillingly through our actions, but sometimes it is the logical result of a corrupt medicine, one that has interchanged its means (power and money) for its ends (betterment of patient health).
The oppressed, the patients, are often in a vulnerable position by virtue of their health problems and the consequences these bring to the rest of their spheres of living and by the extent to which they are kept in the dark, without accurate information, without unbiased guidance, without being able to exercise their judgment and responsibilities. Found in that position, many accommodate so that they can get the care that is offered (think about how many pay without complaint when asking for copies of their own medical records; or how they silently tolerate unfair labels in those very records). This is the passive behavior of the oppressed. That should be no more.
Many institutions are working hard to promote the voice of the patient. They have patient and family councils with the intent of having patients affect the planning and offering of services. Many clinicians and researchers are working towards ways to better share information and decisions with patients. Others are working on enhancing the transparency and accountability of health organizations, research, and practice. But these are early days. The need for an emancipation of patients, i.e., the radical modification of certain (not all) aspects of healthcare that oppress patients, is before us. Only a joint effort by health professionals, healthcare institutions, and empowered patients will help us achieve the goal of a patient revolution. The outcome will be healthcare that meets the needs of patients, with patients at the table as fellow humans, as informed and empowered people, as full partners with health professionals, as collaborative drivers. The outcome will be fair, just, open, transparent, equitable and participatory medicine. That is why I joined.
About the author
Victor M. Montori, MD, MSc (Twitter: @VMontori; Wikipedia) is Professor of Medicine, Director of Healthcare Delivery Research, and Consultant in the Divisions of Endocrinology and Healthcare and Policy Research at the Mayo Clinic, in Rochester, Minnesota, USA. He is member of the Editorial Board of the medical journals Annals of Internal Medicine and Medical Decision Making, and is on the Steering Committee of the Minnesota Shared Decision Making Collaborative and of the International Patient Decision Aids Standards. His professional activity includes consultations with patients with diabetes and research into how we know what we know and how best to apply it in practice at the KER Unit (Knowledge & Encounter Research) at Mayo. He lives in Rochester, MN with his family.
Welcome, Victor! It’s great to have your energy and vision!
Readers, the coming year will be active for your Society. Participate!