You should care about it, because you will be a subject (or “guinea pig” as some prefer to say), without your consent. And of course you will be paying for it, at a time when so many Americans can’t pay their rent.
A mere one billion dollars may not sound like much, if you focus on the one rather than the 9 zeroes, but it would buy a $10,000 car (or insurance policy) for 100,000 people. And Comparative Effectiveness Research (CER) won’t buy anything for you; it will just pay bureaucrats and researchers.
Then there’s the $15 billion (a car for 1.5 million people) to bribe physicians to buy computer systems costing around $50,000 for a start. That’s to keep track of all the information from every doctor visit to feed into the CER and other government and third-party surveillance systems. Unlike your naked image on an airport scanner, which is not supposed to be saved, your medical secrets will stay in the system forever.
If your doctor likes electronic records, he probably already uses them, and he almost certainly already has a computer. He doesn’t need you the taxpayer to buy him a new one that costs 50 times as much as yours did. The government-approved system may (probably will) slow the doctor down, but there is no evidence that it will make him a better doctor, or improve your treatment.
A doctor who takes care of you personally, rather than the “System,” can keep track of your medicines confidentially on a paper flow sheet. If he uses paper prescriptions, a pharmacy might have to call him once a month because of an illegible word. Users of e-prescribing often report a huge increase in the error rate.
No matter. CER is about getting your data. So what will the “researchers” do with all your data?
One thing they will NOT do with it is discover new treatments. No such claim is even made for CER.
CER will just compare already existing treatments and determine their “effectiveness,” which has a lot to do with cost-effectiveness. In any event, they define effectiveness; you don’t. If a treatment doesn’t make you well enough to work and pay taxes, even though it enables you to get out of bed without pain, it might be considered ineffective. If a cancer treatment cures a few but on average prolongs life only by a few months, then it probably won’t make the CER cut.
Remember that childhood leukemia used to be incurable. The early treatments were not very effective, but based on what we learned from trying them, many children are now cured.
Even the strongest advocates for medical Comparative Effectiveness Research (CER) don’t talk about curing cancer or heart failure, or controlling rheumatoid arthritis, or slowing the progress of Alzheimer’s. They talk about saving money for the System, or increasing the percentage of patients with a blood pressure or cholesterol reading that they consider acceptable. They are not even focused on whether treatment X, Y, or Z is best for you. CER compares the cost-effectiveness of joint replacements for old people with social worker home visits for newborns. Should they spend your money on treatment X for population A, or on treatment Y for population B?
One expert who rather likes CER cited the Oregon plan as a good example. A purportedly scientific method was used to make a list of some 400 procedures in order of priority, with the idea that managers would draw a line somewhere on the list when Medicaid money ran out. The more “effective” procedures would be paid for; those under the line would not be. Treatment for your kidney stone might not be paid for, while the money was used for contraceptives, smoking cessation counseling, or screening of basically healthy people.
CER is not about helping you; it is about the System. You contribute data; it classifies you and determines your eligibility for whatever the System decides to offer. It is not exactly a death panel. But the ultimate result is preventable death, pain, or disability for some, while the managers, purveyors of “preferred” preventive drugs, vendors of “health information technology,” and researchers still get paid off the top.
Commentary by Jane M. Orient, M.D.
She is executive director of the Association of American Physicians and Surgeons, a solo practice in general internal medicine since 1981 and a clinical lecturer in medicine at the University of Arizona College of Medicine. She received her undergraduate degrees in chemistry and mathematics from the University of Arizona, and her M.D. from Columbia University College of Physicians and Surgeons. She is the author of Sapira’s Art and Science of Bedside Diagnosis (2010, 4th ed., Lippincott, Williams & Wilkins).
Editor's note: The American Recovery and Reinvestment Act of 2009 contains $1.1 billion for comparative effectiveness research. Comparative effectiveness research (CER), as defined by US government's Health and Human Services, compares treatments and strategies to improve health. The information, the agency claims, is essential for clinicians and patients to decide on the best treatment and enable our nation to improve the health of communities and the performance of the health system.
Comparative effectiveness research further defined here.