Yesterday a Tweet crossed my screen that got me thinking. The source of was Gilles Frydman, founder of ACOR (Association of Cancer Online Resources) and a pioneer in the e-patient community:
@gfry: Participatory Medicine evangelists say “Engaged, empowered patients are better, healthier patients.” Where is the evidence?
What makes this question so ripe, in my oncologist-patient-teacher-blogger’s way of thinking, is that we may never, even if formal studies do provide data on this issue 10 years ahead, reach an objective conclusion on this matter.
The problem is this: To prove that empowered patients are “better and healthier,” how would we design a trial? If we were to compare those engaged – who almost by definition are more educated or at least have Internet access, or who are one way or another are linked to people who can help them find needed information — they’d likely do better than the disconnected patients. But the outcome might be a function of confounding variables: their education, economic status, on-line connectivity, etc.
I think the answer is inherent in the goal of being engaged, and this has to do with the concept of patient autonomy – what’s essentially the capacity of a person to live and make decisions according to one’s own set of knowledge, goals and values.
Autonomy in medicine, which borders on the empowerment idea, can be an aim in itself, and therefore valuable regardless of any measured outcome. For autonomy, or patient empowerment, to be meaningful and maybe even “better” in the strictly medical sense, as measured by outcomes like survival or quality of life, there needs be stronger public education in the U.S. and everywhere.
You can read all you want on stem cells, gene therapy or rare forms of chronic leukemia that are driven by a turned-on oncogene, but if you don’t know the basics of science and math, or don’t have sufficient language skills to read and absorb new knowledge or at least ask pertinent questions, it’s easy to get lost in that information, overwhelmed or – worse – suckered by those who’d try to persuade you of something that’s not true, cloaked in pseudoscience, that’s abundant and available on-line and, occasionally, in some doctors’ offices.
This is why public education matters, so much.
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If patients ask the right questions (ie see Questions are the Answer website), what percentage of the time do you think that their “bs” detector will be able to prevent them from being suckered by a doctor trying to push them towards unnecessary treatment, even though they might not have a sophisticated grasp of the subject material?
Dr. David, I’m not quite sure what you mean. I tend to think that patients and doctors, both, vary in their capacity to say and/or detect b.s.
Are more autonomous patients better and healthier? Healthier, probably not, but at least they are more likely to get the treatment they want, and that will make them feel better. If not healthier and better, we can make patients better informed, and more autonomous independent decision makers. Empowerment relies on trustworthy information. There is a good chance you’ll find just that kind of information at http://www.thedecisionaidcollection.nl. It contains a comprehensive collection of decision aids, meant to help you with making your treatment decision. Healthier and better, there is a question mark there, but better informed? For sure.