1. “OK, go ahead, take charge” (if you think you can, and Internet sources can supplant physician expertise) (*no patient can match the expertise of a physician, nor can any Internet source). This seems like a deliberate misunderstanding of PM.

2. take charge because the health care system is broken; you have no choice. This is practically true where I live, and for my demographic;

3. go ahead, take charge, it absolves us of legal liability

The best meaning is “take charge, enter into a fully responsible and educated partnership with your physician; see what we can accomplish together.”

There is a flip side to participatory medicine, reflected in physicians’ dominant view of patients. “I am tired of doing so much for your health, when you do so little.”

This must necessarily be a valid part of PM:
Implied and stated here is a Call to Patients to Step Up: If you want your physician’s respect, if you want to be healthy rather than assured that you are “ok” when you are not, YOU, the PATIENT, has to change, too.

Docs on The Health Care Blog are bitter about sharing records with patients because 1) there is no profit in it; and 2) their experience of patients (which they perpetuate through their own Dr. Knows All protocol) is that patients are passive, uneducated and self indulgent.

As a teacher, I often feel the same way: Why should I put more energy into a student than the student or family does themselves?

The good news: From my end, I can encourage a new generation of students to invest in literacy in order to save their own lives and those of their loved ones. Here, they will have no choice. The American health care system is broken and will not be fixed in the near future. In our area, which has a dearth of specialists as well as pcps, if you don’t get educated, you can die.

Participatory Medicine means that BOTH SIDES CHANGE. I teach in a distressed economic area where kids’ main snacks at school remain Cheetos & Coke, despite all of the health care warnings plastered everywhere (at taxpayer expense) about the risks of childhood obesity.

GOOD COMMUNICATION IS GOOD MEDICINE

One solution is for physicians to come out from behind the professional aura of Rational, Emotionless Scientist. Find a site to Express frustrations in a way that their patients can HEAR. Instead, patients often get the body language, the curt attitude, etc. that implies rather than states that they are less than nothing and the unspoken thought: “Why should I hand over test reports if you are too lazy or uneducated to decipher them on your own? Take the pill and leave.”

I suspect that I”m pretty much an average doc, not the smartest, not the dullest. BUT, one thing I somehow understood better than my colleagues at an early stage in my career was that I can not know everything. I can only try to find the best guidance for my patients, and to present it to them in a way that they can understand. That leaves pretty much everything else up to them.

But as your own run down of your “adherence” to what you know to be important demonstrates, we all make choices as patients that are not in our best interests. Chances are, a lot of people reading this post are overweight, some smoke, many drink more than is healthy. Almost none get enough exercise, and definitely get too little sunlight/vit D. In my own sub specialty, the vast majority of my patients with poorly controlled epilepsy drive, when I’ve pointed out that state law says they must turn in their licenses. Many miss medications regularly, do not get enough sleep, and lie to their employer about their condition.

Recently, the Supreme Judicial Court in Massachusetts LOWERED the bar for holding practitioners responsible for lots of this behavior. When I’ve held focus groups of my patients, not just my e-patients, I find that the former make up the vast majority of my panel, and they are NOT INTERESTED in taking an active role in their care. They do not want to use the same technologies with providers that they use with friends and even retail business.

Many providers who have embraced e-patients find it much more fun and rewarding, but there are not enough of them. A friend decided he’s only take on patients who are e-patients and found that he had a tiny, concierge practice. So, please, by all means write on this topic, shout it from every hill if you have to.

It’s increasingly clear that the unifying thread in this movement is partnership, collaboration, what we’re calling participatory medicine.