How patients get the best care

What are the social and psychological factors that affect how people are treated — or
even their health outcomes? This question has popped up in my reading and in my work quite a bit this week, and 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

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
and Dr. M. Chris Gibbons.

I presented the Pew Internet Project’s latest "thermometers of
" (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; 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."

Susannah Fox is the associate director of the Pew Internet & American Life Project. She blogs regularly at e-patients.net.

Categories: Uncategorized

Tagged as: , ,

3 replies »

  1. I agree with Peggy Orenstein’s comment “I do think that educating yourself, advocating on your own behalf and being engaged in your own health care decisions is crucial.” Too bad it’s so hard!
    We try to make the job of educating ourselves easier on our free website http://www.WhereToFindCare.com. There you can research quality and patient satisfaction data of health care facilities before you choose one.
    We hope to improve the care everybody receives by helping them choose the best quality provider – regardless of the attitude they have.

  2. It’d be great if we could treat our own illnesses. For example, if we called in to a number, we can be walked through a step-by-step process on how to take care of our medical problems. GetABBY is currently working on a system because of the growing shortage of doctors and the rising number of patients.

  3. Susannah — As a cancer e-patient, I’ve found that the “did stress cause my cancer” discussion leads to some of the most explosive exchanges I’ve encountered in online patient communities. To say it’s a loaded subject is an understatement. However, I think we do ourselves as much of a disservice if we completely dismiss the mind-body connection as we do if we assume stress “causes” illness. I think there’s enough evidence out there that illnesses such as depression have significant physical impacts that this merits ongoing study rather than ongoing grandstanding on either side. I would love to see the experiential data e-patients share with each other on this topic be part of any such study!!