What is the risk that, as soon as the health care system reform becomes an intense focus of policy (as it is now), more and more attention will get devoted, not to controlling health care spending, but to continuing to spend while finding reasons why what was just spent does not form part of what could/should be reformed? Based on the developments of last 2 weeks, including the huge fight over the real cost of the proposed reform and the continuing discussion over Atul Gawande’s masterful article, “The Cost Conundrum” , my guess is that we are heading straight into Goodhart’s kingdom. Seriously, when was the last time you saw a winner of the Nobel Memorial Prize in Economics make a comment in a blog post about health care?

Discussions about the reform of the system are clearly no longer directed to improve care, outcomes and  patient experience. On the contrary conversations have become almost exclusively about lowered costs. It is as though most of the people involved in thinking about the reform really don’t want to remember that medicine (the topic central to health care reform) is all about you and me, the current and future patients, not about saving an array of professionals whose income has become totally dependent on the accumulated and constantly growing dysfunctions of the system.

Health care reform should start with simply accepting that all human beings have the right to be treated as human beings, in sickness just as much as in health. As long as our bodies remain the best income proxies for millions of Americans whose business depends on extracting as much value from sickness as possible we will have a nasty case of Goodhart’s law and real reform will remain impossible.

Pay attention to how the politicos and the media are churning news, almost non-stop, about how much the reform will cost. Will it be $1 trillion, $1.6 trillion or $3.7 trillion? Ask the average person and they’ll almost certainly look at you with eyes filled with fear and guilt, because everybody knows something must be done but frankly, the more we hear about it the more we experience that it’s just too overwhelming.  We have been spoon fed sophisticated lies for too long. Because we have been used as the proxy source of income for all the participants of Opaque, Inc we have never been told:

• what is the real cost of care for each one of us and,
• how we have been brainwashed to believe that so called unlimited medical choices always result in better outcome.

Attacked by soundbites that include one of the huge numbers, we become paralyzed and unable to start questioning any of the statements made by each of the defenders of the established order, as well all the statements made by politicians who are almost always motivated by undeclared biases.

But when the dust settles, we will be left with one simple question. Are we getting better care than before? My theory is that you cannot reform the health care system as long as you fixate on the system. It is too broken and too dysfunctional for multiple reasons as noted by countless experts. But almost none of these experts live and breathe what the people in this blog are experiencing daily.

Health care is not about money, it is about care. It is not about RBRVS, it is about helping the patients having to make complex decisions about pros and cons of various treatment options. It is not about private insurance vs public plan, it should be about health and wellness. It is not about unnecessary procedures, it is about ending the paternalistic model of medicine. Truly empower the patients and they’ll be able to see through many of the dysfunctions and will force changes faster than any mandated reform.

The transcript of the commencement address is definitely worth reading because it is another powerful call for structural changes. But it has one particular advantage for me. I learned of the Positive Deviants, a concept that has been in existence since the 80′s. This concept can explain what I have witnessed with ACOR for 14 years.

Because Positive Deviants derive their extraordinary capabilities from the identical environmental conditions as those around them, but are not constrained by conventional wisdoms, Positive Deviants standards for attitudes, thinking and behavior are readily accepted as the foundation for profound organizational and cultural change.

That is definitely how you would describe every one of the most active patient advocates you find on Twitter. Most of them have created large followings because they demonstrate an exceptional ability to think outside the box and create solutions to their particular problems.

I believe that we have not been attentive enough to the many positive deviants out there, who probably stand by the thousands, if not more, and that have found on their own, a personal solution to their main healthcare problems.

The strong reaction to Kevin Kelly’s Quantified Self blog post about the Journal of Participatory Medicine is a clear indication that, as the system is breaking down a little bit more every day, people have found many adaptative solutions that have never been catalogued, let alone studied. Note that studies about Positive Deviants consistently show that the single most important element in their patterned behavior is their passionate commitment expressed through their mental model. However, they don’t usually know they have a mental model and it is difficult for the new person to grasp the model because it is both unconscious and defined using highly abstract thinking. That sounds remarkably like all the e-Patients I have met!

As we build the Society for Participatory Medicine, it is my hope that we will embrace all the deviants, as long as they are of the positive type!