Carolyn Clancy on Comparative Effectiveness:

The Agency for Healthcare Research and Quality has spent much of the last four decades quietly reviewing medical studies and crunching digital health data – two skills that will come in handy for comparative effectiveness research now that Congress has set aside $1.1 billion in stimulus funding. Advocates say the research, which pits medical therapies in head-to-head comparisons, can trim costs and boost quality, and could be a key to health reform. But opponents say it amounts to rationing health services.

AHRQ’s share of the American Recovery and Reinvestment Act, about $300 million, will be added to the $75 million the agency has already invested in CER in recent years. The National Institutes of Health and Health and Human Services Secretary Kathleen Sebelius will split the rest.

Dr. Carolyn Clancy, the agency’s director, has been through the thick and thin of comparative effectiveness research. She joined the agency in 1990 on the heels of a Kaiser Family Foundation fellowship (the Foundation also funds Kaiser Health News), and became the agency’s director in 2003. In May, Kaiser Health News spoke with Clancy.

Q: What broad goals you do hope can be achieved with this installment of funding?

A: It’s a great time to be alive in 2009 because all of our success in bio-medical science has meant that for many decisions, both in diagnosis and treatment, you’ve got two or more really good options. The problem is you don’t have information that helps you figure out, for any particular individual, which is the right choice. Doctors and patients are working together in a relative evidence-free zone. Our goal is to address that very important gap.

Q: A recent report in the New York Times recalled a back pain guideline your agency published in 1994. The guideline favored some treatments and said others weren’t effective. What makes the proposed research different?

A: Now you see physicians, you see patient groups, you see health plans, you see many stakeholders stepping forward to say this information is really important and we need it. We can’t do a better job and make the right choices without this information. I don’t think that kind of constituency was there in the mid-90s.

Q: The guideline was the product of the searches and synthesis of existing literature that you’re doing now. What made it controversial?

A: The concern is how that information will be used. That is a broader societal question, and it’s well beyond what we’re doing in the research. From our side, all we can really do is be as transparent as possible about how the research is conducted. But ultimately, for people to trust this, we’re going to have to be fairly transparent about how the information is used, and I mean “we” as a society.

Q: You wrote in Health Affairs, “Comparative effectiveness research is a key component of, but tightly linked with, health care delivery itself in the Information Age.” What did you mean?

A: In order for this information to actually be useful to clinicians and patients, it has to be available when they’re making decisions, in something like real time. I sometimes think many patients believe, when they’re going to see a doctor, that that kind of information is available, either in the doctor’s head or it’s just “click-click” and there you go.

Q: You’ve said there are challenges to linking quality to health IT. Could possible problems with the implementation of recovery act funding for health IT derail efforts to align those investments to quality?

A: First of all, the recovery act specifies incentives for providers to adopt electronic health records, but wisely doesn’t say, ‘you just have to buy a product.’ The incentives are linked to meaningful use. I’m reasonably confident with the current national coordinator [for health information technology], Dr. [David] Blumenthal, who comes at this whole challenge from the perspective of improving health care, rather than how rapidly can we move electrons around.

Q: You were clear in congressional testimony last summer that the national coordinator’s job was technical implementation, while AHRQ worked on using the technology to improve quality. Is Dr. Blumenthal doing both?

A: I think that’s correct. We didn’t have the same policy imperative then. The context was much different. There was not an imperative to reform health care.

Q: How much of a top-down approach to health IT implementation is needed to achieve research and quality goals?

A: In order to take advantage of learning from health care delivery, you have to have some standards so we’re recording information consistently. If I call it a heart attack, but my colleague calls it a different code, if I don’t have software that understands that we’re essentially talking about the same clinical event, that’s kind of a problem.

Getting to that consistency, though, is ultimately a very democratic enterprise and in our health care system, has to be based on very strong collaboration between the public and private sectors. I hope you’ll notice how that just rolled right off my tongue.

Q: How does health information propel clinical decision support?

A: Amazon[.com] is the model I use all the time. It will tell me Bruce Springsteen has a new CD out. And thankfully, it does not tell me anything about people I’m not interested in. Technologically, we know how to filter information and customize it for individuals based on their preferences. What we need to do is organize medical information in such a way that we can actually provide that same kind of messaging.

Q: Do you think the research should be used to make decisions about coverage or payment?

A: Right now we need better information. There are so many times in care delivery when clinicians and patients don’t have the right information that we’ve gotten use to not having it. Will we need incentives? We may. [But] all studies of financial incentives are almost meaningless if you don’t look at the overall context of what it is that you’re doing.

Q: What would be a sustainable, long-term model for CER?

A: I’m completely focused and absorbed on that total package right now. It’s a big down payment on really building an infrastructure on a learning health care system, which I think is likely to make health care reform sustainable over the long haul.