inching towards “the patient revolution”

Escalating calls for a “patient revolution” are pouring in from the blogs and books of doctors, researchers, patients, activists, and all sorts of policy people. The movement is not all new, however. In “Towards the Emancipation of Patients: Patients’ Experiences and the Patient Movement” (2010), UK patient advocate Charlotte Williamson reviews the international rise of the patient movement in the 1960s and 70s, fuelled, she argues, by changing attitudes towards authorities (doctors are no longer gods) and growing public awareness about all the kinds of problems in the health care system that result in poor quality health care.

Now of course, with the internet to put everyone in easy touch with like-minded and like-experienced people, the number of projects and organizations claiming to work on behalf of patients is multiplying exponentially. Some are hand-to-mouth mom-and-pop operations working from the kitchen table and some are huge and well-funded operations that can invite Bill Clinton to their “summits.”

Though they are diverse, the major emphases of these groups seem to reduce to four:

• Promoting shared decision-making between patients and care providers (“no decision about me without me”)
• Patients encouraged to show consumer power by seeking information, giving feedback, and exercising choice
• Patients acting as citizens by influencing policy (see Nortin Hadler’s 2013 book, “The Citizen Patient”)
• Collaborative efforts to reduce medical harm and promote safety through training, use of checklists, patient companions, etc.

The SELLING SICKNESS movement is committed to raising the visibility (and audibility) of the patient voice – as consumer, as citizen, as advocate. It is at the top of our agenda. But our perspective seems a little different than that of these other patient groups. In much of the patient-centered literature we miss explicit attention to what patients need to know about how thoroughly corporate profits pervade the research and marketing of medical tests and treatments.

Advocating for patients is more than just advocating for access, it’s about advocating for transparency and for quality. Without the part of the analysis about corporate power, activism for patient rights and patient engagement will lack the full arsenal of strategies because it lacks awareness of just what kind of water we are all swimming in. This was brought home to me (L.T.) this week by a wonderful new book, “Lethal But Legal: Corporations, Consumption, and Protecting Public Health,” by public health sociologist Nicholas Freudenberg in New York. I will write about it soon.