When you feel sick, even before you go to the doctor, where do you look for information? Probably Google or another search engine. The information you find is often downright scary, and that information is too often wrong or sponsored by a drug company. Nowadays, the first few items that pop up on a search engine page are usually “sponsored” ads, and it is not always easy to distinguish factual information from advertisements.
You may have heard that less than 20% of what physicians do has solid medical research to support it. That’s kind of astounding when you think about it. Doctors do something because that’s the way they were trained to do it, and until new information comes to light, they will continue to do it the same way. Take the treatment for ear infections in kids. Doctors prescribe or parents demand tubes, antibiotics, anything to stop the pain. But good research shows that too many antibiotics have negative outcomes. As a result, treatment for ear infections has changed appropriately over the past several years. Same for tonsillectomies, the third most frequent surgery for children. For older adults, guidelines for the treatment of diabetes and heart disease have changed too, to take into account the needs of an aging population.
We are all supposed to be “engaged patients.” We are supposed to research our symptoms and diagnoses. But “patient engagement” is one of the most overused and least understood terms in health care discussions today. Everyone talks about the need for it, but few providers know how to really use patient input. Some doctors welcome an informed patient; others not so much. Some organizations will put one patient on their board or advisory committee and consider patient engagement done.
As someone who has served as a consumer representative on boards that evaluate new treatments, I can tell you that patient engagement is critically important to assessing what really works in terms of treatment and care, and what research is needed to inform decision making.
Yet few opportunities for this exist.
In fact, special interests and those frightened of change, are challenging evidence-based efforts to evaluate health care system innovations and high-cost drug treatments. Instead of fighting these efforts, they should be demanding more of them and insist that patient voices are part of the discussion.
Fortunately for patients, there are two places where their voices will be heard and where they can find good, evidence-based information. One is a non-governmental nonprofit program called PCORI (Patient-Centered Outcomes Research Institute); the other is a nonprofit called ICER (Institute for Clinical and Economic Review). PCORI was funded in 2010 by the federal government as part of the Affordable Care Act (one of the many aspects of “Obamacare” most don’t know about). The Institute’s money comes from the government and fees assessed to private insurance and self-insured employer-based plans, but PCORI is completely independent and conducts its business in public. PCORI and ICER meetings are public and patients are heavily involved in deciding what research should be done and by whom. PCORI’s research has included how to best manage side effects of cancer treatment, how to help people recover from strokes more rapidly, and how to pull specialists together to more effectively treat lung cancer. These research projects were all selected and guided by patient input.
Another area where patient voices are welcome is in the evaluation of drugs for conditions like diabetes, multiple sclerosis, high cholesterol, or psoriasis. Many of these drugs are advertised constantly on TV with very little helpful information for patients about which of the side effects is most prevalent or serious—Nausea? Headache? Liver failure? The nonprofit that provides this information is called ICER (Institute for Clinical and Economic Review), and their funding comes from nonprofit foundations (70%) with the remaining coming from life science companies, and health insurance companies. ICER is “dedicated to improving patient care by providing independent, completely transparent evaluations of how new drugs compare to existing treatments”. It is different from the FDA in that ICER also looks at the cost of treatments as well as their effectiveness, which is helpful for patients making their decisions when their insurance does not cover the drug or deductibles or coinsurance may be very high.
Bottom line? An internet search can get you started when you need information. But as a patient, you need to know that there are places you can trust to give you the whole story. *
*A version of this blog was published by me in the Huffington Post previously.