Search all of the Society for Participatory Medicine website:Search

Cross-posted from my own blog.

Truth be told, at present, the activities of “La Cosa Nostra” are more transparent that what goes on in the health care system. The only certainty I have, as an individual trying to figure out what is not wrong with the system, is what Peven Everett describes so accurately: “You/got/me/in your/Po/ /Wer/ /I can’t/decide/which/way/ /I’m stuck/”

It is as if all the participants (stakeholders in HC parlance) had decided that opacity is the key to their long term financial well being. Remember the last time you had to go to a hospital to get a procedure done? Did you try to get a detailed description of the items in the bills you received from the hospital & doctor practices associated with that medical procedure? Good luck to you! It’s almost impossible. Did you try to figure out which elements in the itemized bill were really necessary and how many were just a disguised surcharge by the hospital/docs. Good luck again! At best, the various medical bills look like a car maintenance bill where you know you have been bilked. At worse you will be fuming for days because it just does not make sense and cost you a fortune. In any case you know that you have been charged for activities whose descriptions are hidden behind incomprehensible codes, that nurses in the doctors office know by heart without knowing what they represent. Ask the doctors. They will tell you they practice medicine and don’t get involved in the office management. It’s great to be billed for activities no one can appropriately describe! Welcome to the American Health Care sytem.

Health care reform is now clearly one of the main areas of activity in DC. Last week White House Summit showed how much lobbying power exist behind the various elements of this puzzle with a gazillion pieces. At 17% of GDP, representing a $2.4 Trillion slice (3 times the amount of the Stimulus Package), the health care system is more and more like a huge weight on the US economy. It is now the largest sector of the US economy and lately the only one that keeps on growing and adds jobs. Due to costs increases that are much higher than inflation rates it has a highly negative impact on America’s competitiveness. Nonetheless every past effort to fix the system has failed, locally, in individual states and at the federal level. Wherever you look, the numbers look horrible and getting worse over time. This combination of constant and accelerating costs increase, associated with poor outcome statistics, tend to make people believe the problems are so intractable that nothing can be done to solve them. We have no solution because Opaque, Inc is at work.

Even at the individual level, you have almost no recourse because Opaque, Inc. is also at work. Anyone who had to deal with a medical procedure knows of the:

  • difficulties in getting copies of reports,
  • inability to reach doctors office and billing departments
  • lack of explanation of the procedures and of the possible side effects

These are just the tip of the iceberg, simple symptoms of a dangerously broken system. Americans have felt for years that the problems are just getting more and more serious. Look at the table below, from the OECD:

Public Satisfaction with Health Care System

Public Satisfaction with Health Care System

82% want at a minimum a fundamental change (34% think we must completely rebuild the system). They want a system that is accessible, affordable and adequate. Today it’s none of these. Explanations abound. It’s usually the fault of some main culprits, whose identities depend on the professional occupation of the responder or their political inclination. Doctors will tell you it’s all the fault of insurance companies, malpractice lawyers and defensive medicine. Hospitals blame other hospitals and lawyers. Public Health experts blame it all on unhealthy lifestyles. Patients blame everybody else. The government blames all private insurance companies. Old companies blame the Unions. The Unions blame the company executives. The right says it’s because patients do not pay directly for care. The left says that it is because we do not have a universal system. In short nobody is responsible. And miracle of miracles, you can shift the blame faster than anyone could ever imagine. The only unifying message from all is that it is always the fault of the others.

In the meantime, medical problems cause half of the personal bankruptcies in the US. This has been going for too long! While we keep on trying to figure out whom to blame this mess, the costs, already so high, keep on rising, uncontrollably. Understanding the system is arduous, with challenges constantly erected by insiders. The complexity of the entire system is mind-boggling, the professional organizations are fiercely defensive of their members benefits, the lobbyists are furiously working to protect the various industries, from the medical device manufacturers to the pharmaceutical companies without forgetting the lawyers, the hospital administrators and the corporations who pay a huge chunk of the total healthcare costs.

And we, the citizens, are left without any understanding, subjected to a dizzying rehash of the multiple system faults, subjected to numbers so big we cannot assess them. We never wanted to learn about the issues because we foolishly believed that we are not paying for care, since the employers do. A prime example of rational ignorance. Opaque, Inc. has masterly succeeded to exemplify the old Aesop quote “obscurity brings safety” . The American public should demand the immediate injection of a healthy dose of transparency in the entire system. In the meantime, for those of us who see the active involvement of the patients in their care as a sine qua non condition for care improvement, we should promote a much better understanding of the issues at stake. Just this past 2 weeks we have learned that the Recovery Act will pump $19 Bn ( that is $19,000,000,000!) to invest in EHRs (Electronic Health Record). Who will be in charge of these investments? Who will decide what are valid systems? No one knows. Opaque, Inc. is definitely working hard on these! Relying on experts to explain the failings of the system is just not going to work! As Jen McCabe Gorman says “We have no yet reached mutually assured destruction! But we will!” Shame on us if we fail gaining equal access at the decision table before we do! The concept of Participatory Medicine will remain an empty shell. And we will have missed an historical opportunity to operate a citizen transformation of this vital and biggest segment of the US economy.