Search all of the Society for Participatory Medicine website:Search

What are the social and psychological factors that affect how someone is treated — or even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, so I wanted to share what I have learned from three leading thinkers: Peggy Orenstein, Dr. Jeffrey Lin, and Dr. M. Chris Gibbons.

Peggy Orenstein recently published an essay in the New York Times entitled, “Stress Test.” Here is an excerpt:

We of the postfeminist generation grew up being told we could do anything, be anything, if we just put our minds to it. Yet, if we have the power to create our own fates, wouldn’t the corollary be that we’re also responsible for our own misfortunes? And, in a kind of double magical thinking, shouldn’t we be able to cure ourselves using the same indefatigable will? No surprise then, that in a 2001 Canadian study of 200 ovarian-cancer survivors, almost two-thirds believed that stress caused their disease and more than 80 percent attributed their survival to a positive attitude.

She writes about her own experiences and the rage she feels when people make assumptions about the mind-body connection. She cites a study of women undergoing in vitro fertilization: “The fretful conceived as readily as the chill.”

I wrote to Peggy, asking if she would identify as an e-patient. Here is what she wrote back:

I do think that educating yourself, advocating on your own behalf and being engaged in your own health care decisions is crucial. And that’s a lot more effective than thinking if you just have a “positive attitude” your disease will go away. Having a sense of agency is a lot different than just being “positive,” especially because sometimes agency means being VERY uncooperative and unpleasant, as any long-time patient knows. At the same, time, it’s hard to feel effective or to take control of your health if you’re depressed. And it’s easy to get depressed if you’re being treated for a serious illness. Being depressed in and of itself may not affect your outcomes as a patient, but if it affects your behavior–if, because you’re depressed you don’t take your medication, don’t exercise, don’t eat right, skip doctors’ appointments, don’t act in your own best interests–then it’s a problem and needs to be addressed. But there’s a real distinction there (I hope!).

Illness is stressful, but your stress didn’t cause your cancer, infertility etc. Reducing stress may well make you feel better, able to tackle what you need to more easily. But if you can’t or don’t want to or aren’t able to reduce the stress it’s important not to beat yourself up about it (which just creates more stress….).

Am I an e-patient? Sure. But I feel lucky to be in a position to be one. I’m educated, white, middle class. No one’s going to mess with me or ignore me. I can navigate the system easily. I often think: what if I were poor? What if I were uneducated? What if I were a person of color? What if I were old? Would I get the outstanding level of medical care that I experience? Would I still be alive? Being an “e-patient’ is an absolute necessity these days, but it’s also, sadly, too often only possible for the privileged. And that’s something I hope we can change…..

These sentiments were echoed at this morning’s Ovarian Cancer National Alliance conference, where I shared the stage with Dr. Jeffrey Lin and Dr. M. Chris Gibbons.

I presented the Pew Internet Project’s latest “thermometers of access” (May 2008 data) showing disparities among demographic groups, connecting our politics research with our health research to show how some people are accessing “industrial strength” information these days (while some are stuck with “consumer strength” information).

Dr. Lin, a gynecologic oncologist, shared his observations about what enables some patients to get the best care — patient/family involvement (NOT “doctor knows best”); pick your battles (Susannah’s question: how will patients know which ones to pick?); have realistic expectations balanced with hope (or, as he also put it, “a positive attitude framed by realism”).

Dr. Gibbons, associate director of the Johns Hopkins Urban Health Institute, talked about the future of technology and health, including a great riff on what he tells doctors who are nervous about patients controlling doctors’ access to their electronic medical records: “It is no different from our current situation. If a patient doesn’t trust you they are already not telling you certain things.”