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Clinicians, the Government, and many other groups are working hard to improve health care quality, but it’s a team effort. You can improve your care and the care of your loved ones by taking an active role in your health care. Ask questions. Understand your condition. Evaluate your options.

Some may think this is the new mission statement of the Society for Participatory Medicine. It could, but the truth is, frankly, much more amazing. It is the opening statement of a new public service campaign to educate health citizens on conversing with doctors, launched by AHRQ . (Thanks to Jane Sarasohn-Kahn@healthythinker – for mentioning it.)

AHRQ, the Agency for Health Research & Quality, is a federal agency from the Department of Health & Human Services, unknown to the public, but doing fantastic work to improve the quality of care in the US!

Something fundamental is happening! Just last year, when Susannah Fox wrote “the plausible promise of participatory medicine” it would have been difficult to imagine the federal government recommending to its citizens: “quiz your doctors.”

The public campaign also recommends:

You have an important role to play to make sure you receive the best care possible.

Get involved in your health care. Talk to your clinician. Research shows that patients who have a good relationship with their clinicians receive better care and are happier with the care they receive.

  • Give Information
  • Get Information
  • Follow-Up
  • Understand Your Diagnosis
  • Chose Quality Care
The most important thing you can do to ensure you get high quality health care is to take an active role in making decisions about your care.

This is pure participatory medicine, exemplified by the partnership of e-patient Dave & Dr. Danny Sands.

Interestingly, some of these recommendations go further than what transpired in Barack Obama’s New York Times magazine interview (“After the Great Recession”) this past Sunday. The great mind who says “the truth is that what I’ve been constantly searching for is a ruthless pragmatism when it comes to economic policy” didn’t say exactly the same about health care.

The President: First of all, I do think consumers have gotten more active in their own treatments in a way that’s very useful. And I think that should continue to be encouraged, to the extent that we can provide consumers with more information about their own well-being — that, I think, can be helpful.

I have always said, though, that we should not overstate the degree to which consumers rather than doctors are going to be driving treatment, because, I just speak from my own experience, I’m a pretty-well-educated layperson when it comes to medical care; I know how to ask good questions of my doctor. But ultimately, he’s the guy with the medical degree. So, if he tells me, You know what, you’ve got such-and-such and you need to take such-and-such, I don’t go around arguing with him or go online to see if I can find a better opinion than his.

And so, in that sense, there’s always going to be an asymmetry of information between patient and provider.

In over 100 days I have not disagreed once with Barack Obama. Until I read these last sentences.

Mr. President, for many Americans, suffering from rare and unusual diseases, living in the long tail of medicine, this statement just doesn’t correspond to the reality.

Many groups of patients with rare diseases have developed, in their own silos, various models of active participation in clinical care and scientific research. These models should be studied and used to facilitate health care reform.

Using online communities to promote active participation, aggregate and share real and deep knowledge about their diseases, e-patients are transforming the quality of care other patients can expect to receive, even extending current science by driving research. This is the deliberative model of patient-doctor relationship, conceptualized by the President’s health care reform special advisor, Dr. Ezekiel Emmanuel. At least for the e-patients suffering from rare diseases this model works only when both the patients and the doctors “embrace knowledge symmetry” as Danny Sands told the audience at the 2008 Connected Health Symposium.