Q&A with CU President, Jim Guest: Consumers should help decide which issues need medical research

An initial list of 100 research priorities and recommendations* for the future was sent to Congress and the Administration today by the Institute of Medicine, an independent group that advises the government on health policy. The list will serve as a guidepost for spending the $1.1 billion that Congress authorized for "comparative effectiveness research" as part of this year’s stimulus bill. This type of research compares two or more medical treatments or approaches for a given condition. The results help doctors, patients, and caregivers weigh the benefits, harms, and value of various treatments and prevention methods.

Jim Guest, Consumer Union’s President, was part of the committee that chose the priorities. We sat down with him today to discuss what comparative effectiveness funding means for consumers, patients and health-care providers.

What was it like to be a consumer rep amid all the medical experts helping to set priorities for medical research?

I was one of a small group of consumer representatives on a 23-member committee that included professors, medical school chancellors, health-care providers, and other research experts. At first I wasn’t sure how receptive the group would be to the consumer point of view. A lot of experts take a "just leave it to us" attitude. But I found the group really listened and realized the value of input from consumers, patients, and caregivers in deciding what topics to tackle and how to maximize the practical impact of research. In the future, I’d also like to have periodic surveys of consumers and practicing doctors to find out what disease areas and treatment options they think would be most valuable to evaluate and compare in order to make well-informed medical decisions.

With all the reams of medical research being published, why did the federal government need to fund comparative effectiveness research?

Consumers usually think that doctors already have great scientific information at their fingertips—and in some cases they do. But some researchers estimate that up to a third of medical spending is for care and services that don’t seem to improve the health of patients, and may in fact make things worse. When it comes to questions about whether one test, procedure, drug, or treatment is better than another, there’s often very little comparative research. In part that’s because pharmaceutical companies, which fund a lot of the medical research, are focused on developing new drugs they can sell and lack motivation to actually compare different treatments since their own product might lose the race. Indeed, while  new treatments and drugs are heavily promoted to doctors and patients, sometimes they’re no better, or even worse, than older ones, which are neglected because no one’s making much money selling them anymore. Consumer Reports Best Buy Drugs, which is based on comparative effectiveness research, has turned up many examples of this.

Which of the more than 2,600 topics nominated for inclusion impressed you the most?

I focused on topics that I thought would make the broadest difference in improving quality of care for large numbers of people and the overall health of the population, so that consumers and professionals could have the knowledge they need to make the best decisions. Some that made the cut: What are the right steps for checking someone with heart issues? How do we improve rates of smoking cessation among underserved populations? What works best in tackling obesity?

What are you most proud of in the IOM report?

The report calls for "substantial" involvement of consumers, patients, and caregivers in all aspects of comparative effectiveness research, from setting priorities to participating in oversight boards to helping make sure that results are described in a way that consumers can easily understand. I hope that raises the bar in the future, and sets a precedent for substantial consumer involvement in government and private sector health research. I was also pleased to see reference to the IOM’s recent report on conflict of interest in medicine, because I think it’s essential to avoid completely, if at all possible, and certainly to minimize, any conflicts of interest among those doing comparative effectiveness research. I’m also proud of how quickly the committee managed to get the work done. IOM usually works much more slowly, and as a publisher it was great to see the team meet Congress’ deadline of June 30 for this report!

—Ronni Sandroff, Editor/Director, Health & Family

*links to PDF