Activist Patients, Cancer, and Medical Care

Two days ago I wrote about the polarized world of health policy, in which "physician-led reform" and "consumer-led reform" fall into opposing policy camps. This either/or dichotomy is destructive foolishness. The only sensible position is that we need both.

Real reform won't happen without robust patient-physician partnerships. I've recently seen an example of what this means in the way my friend Jessie Gruman handled a health emergency.

Jessie is the founder and president of the Washington-based Center for Advancing Health, an organization whose efforts "are aimed at increasing patient engagement in the belief that people will not benefit from the health care available to them unless they participate fully and competently in it." (Disclosure - I was on the board of the Center from 1998-2004.) Jessie has a PhD in social psychology and all kinds of work experience, but she also has more personal experience of medical care than anyone should have to go through, including, until recently, three different cancers, starting with Hodgkins Disease in her late teens.

Here's how Jessie writes about her most recent experience:

This is my fourth different cancer-related diagnosis. My stomach cancer was discovered due to the vigilance of my primary care doctor who treats adult survivors of childhood cancer and who leaves no symptom – regardless of how minor – unexplored. I had dismissed my insignificant symptom once it disappeared after a few days. However, my doctor didn’t, and it turned out to be a small gastric tumor, probably a result of the high doses of radiation that were the standard of treatment for my stage of Hodgkin’s disease in the early 1970s...Breaking through [the turmoil I felt] are bright flashes of gratitude: for the amazing luck of finding the cancer while it is small; for my access to smart doctors who take me seriously and who will do their best for me...

Jessie's narrative shows us what "patient-physician partnership" means. Jessie is the quintessential "informed," "consumer-minded" patient. But she's not making impersonal purchases of medical commodities - she's working in close partnership with physicians she trusts.

Jessie took the advice of her trusted primary care physician to investigate the gastric symptoms. But in relation to medical care she's a leader as well as a follower. As an example, two years ago Jessie wrote a wonderful succinct guide for what to do when someone close to us has cancer (see here). But being an activist patient doesn't require a PhD, as exemplified by a former patient of mine who gave me an insightful performance review (see here).

Patient-Physician Partnership means activism by both parties. "Consumer" and "provider" are unfortunate metaphors, with their associations to window shopping at the mall ("consumer") and hawking of goods and services("provider"). Throughout my practice years I was grateful for the guidance and teaching I received from my patients, and I believe many of them were grateful for my care. That's what "partnership" means.

Jessie's post that I quoted above was written on September 27, the day she went in for surgery. I'm happy to report that all went well and she's at home now. I'm sure that after she rests up Jessie will again be teaching us about what patient activism and patient-physician partnership mean!