National Editor

Carolyn Clancy, MD, is director of the Agency for Healthcare Research and Quality (AHRQ; Washington), a U.S. Department of Health and Human Services unit charged with analyzing the nation's healthcare activities to facilitate improvement. She joined the agency in 1990, working first as director of its Center for Outcomes and Effectiveness Research. She was named acting director in March 2002, the official appointment as director coming in early 2003. A graduate of Boston College and the University of Massaschusetts Medical School (Worcester), she first worked as an internist and health services researcher, then was named a Henry J. Kaiser Family Foundation Fellow at the University of Pennsylvania (Philadelphia), and also served as an assistant professor in the department of internal medicine at the Medical College of Virginia (Richmond).

Clancy holds an academic appointment as clinical associate professor in the department of medicine at George Washington University School of Medicine (Washington). She is senior associate editor of the journal Health Services Research and has served on the editorial boards of various medical journals.

Clancy has published widely in peer-reviewed journals and has edited or contributed to seven books. She is a member of the Institute of Medicine (Washington) and was elected a Master of the American College of Physicians in 2004. Her major research interests include key dimensions of healthcare quality and patient care, including women's health, primary care, access to care services, and the impact of financial incentives on physicians' decisions.

Biomedical Business & Technology recently discussed the state of U.S. healthcare with Clancy, with a focus on healthcare delivery.

BB&T: What were some of your first experiences which brought you to be concerned with the issues involved in healthcare delivery?

Clancy: My first job was as a medical director of a clinic at the Medical College of Virginia and it was hard not to notice that while all of the doctors and nurses cared very much for their patients, but that this didn't add up to the best care for all patients. For example, many of our patients had common challenges around tobacco and obesity, and I would notice we were dispensing the same advice to a whole line of patients one at a time and I figured we could be far more effective if we could put groups of these patients together in group classes or group visits. But we didn't have the capacity physically and no one was yet paying for this.

Plus, most of these patients had no insurance. It was not practical to tell someone who lives an hour or two away, with unpredictable transportation, to come back for a test to figure out their problem. The probability that they would come back was not so hot. So there were lots of questions about how to provide good care under challenging circumstances. Should we admit the patient? Who was the attending physician in charge this month?

And when I was on the faculty at the Medical College of Virginia, one of the basic issues we struggled with from the clinical perspective was that we weren't routinely notified when a patient was admitted to the hospital. Sometimes a patient would call from their room to say they had been admitted.

So I saw lots of variations in practice, and my earliest research interests were about trying to evaluate when we needed to use certain diagnostic tools and strategies. And I was learning about research, for instance, showing that if you lived in northern New England, whether you reached age 50 with an intact uterus, or not, depended on which county you lived. And, in particular, I started to get very excited about the power of an electronic health record. I could see the possibilities.

BB&T: What about any personal experiences you have had with healthcare delivery? Have any of these been important?

Clancy: Yes, I once had an operation for a problem that was different than the one I actually had. Here I am in Richmond, Virginia, and my mother wanted me to go home to Boston. I thought about that long and hard and thought she was wrong.

The diagnosis had been mixed and I went to a different hospital [than the one I worked at] — in part because of privacy issues — and the diagnosis, going in, was that I had a tumor. I didn't think so, but I was so sick that I could only squeak my objections. The result was a ruptured appendix and an abscess.

BB&T: AHRQ is focused on research intended to guide the improvement of healthcare. Would you sketch just briefly, the general organization of the agency that it uses to carry out this mission?

Clancy: What we have done over the past few years is to create a framework that pulls together the work of major priorities: patient safety and quality; use of health IT to improve safety and quality; another is research concerning the effectiveness of treatments. The other major themes are prevention and care management, and improved value in healthcare. The final area is emerging issues, and innovation. What are the problems we should be anticipating and where should we be making investments right now to accelerate imrprovements in healthcare organization, delivery and management.

I should note that this is a great time to be alive because you often have two or more choices, in terms of diagnosis or treatment. So we're working on figuring out what is the right treatment for you under a specific set of circumstances.

We're looking at how to get the most return on investment for all that we spend on healthcare, for improving care for people with chronic illness and identifying these at earliest possible stage

We are supporting, disseminating research and we're getting a lot smarter at figuring out how to exploit and expand the word dissemination of this research putting materials on our website, in journals.

We're getting much more strategic, more targeted about partnering with a much bigger organization concerning the effectiveness of treatments. We're identifying and working with partners, national business groups on health, very large employers that want to know how to get information about the people they care for. We've partnered with Consumer Reports, with Medscape, WebMD and others that are perceived as much more credible sources of information than an organization that patients might not have heard of. [For instance,] people who go to Consumer Reports may not know that AHRQ exists.

BB&T: The United States obviously has great healthcare technologies, but as you've noted these don't get delivered either effectively or equally to all. What do you see as the primary causes or barriers preventing equal and effective healthcare delivery?

Clancy: There are a number of barriers. One is that on average it takes about 17 years for some research to be translated into patient benefits. We don't have a really good distribution network for knowledge. We don't know when certain treatments are most effective and for which individuals. There really isn't a systematic place where you as an individual or a doctor can figure out, should I use the new treatment or is the one I'm using now just as good. We are far from having a very organized approach to this.

A second [problem] area is culture. When I was trained as a doctor, medical school students were trained to see one patient at a time, do the very best you can and move on. And because the system is paper-based, we can't see how we're doing over time.

This longer-term view is not a core part of our practice. We don't pay for it. We pay for seeing one patient at a time, and then we're moving on as rapidly as possible rather than systematically collecting information.

The good news is we're doing so well on some things that we have started doing routinely that we don't count that any more in our report card [the National Committee for Quality Assurance].

Last year an article [in the New England Journal of Medicine] titled "Eulogy for quality measure" reported that the use of beta blockers for patients who have had a heart attack was dropped. That performance is now routinely excellent.

BB&T: Another issue is patient safety. What do you think are the main reasons for the spotty record of the U.S. in this area?

Clancy: It's [the result of] how fragmented our care is, that we don't really have a healthcare system that's a big part of the problem. Certainly we need an electronic system, though hospitals have made investments in this and are starting to use these effectively.

Healthcare is a team sport no matter how you cut it. But we don't train people in teams. And so most healthcare organizations are kind of bound in chaos. And to be honest, in addition, healthcare is also increasingly complex. A lot of these technologies that are life saving are just so tremendously complex.

BB&T: What do you see as the primary disease threats over the next 10 to 50 years?

Clancy: I think that there is a very big recognition that we have to do a much more effective job working with patients with one or more chronic illnesses to help them manage their own care. If the patient comes to the doctor's office every week, that is only a teeny fraction of the time they live with their disease. [U.S. healthcare] is organized around acute care, and we have a lot to learn in terms of trying to figure out how patients with chronic illnesses get the right care and get the support they need to manage their illnesses effectively.

A lot of spending in healthcare, 70% or 80% is for the 20% of patients with chronic illnesses. And at the core is obesity.... [I]n the past 20 to 30 years, the occurrence of obesity is up in all age groups. You can't pinpoint any one group it's not just a matter of computers and video games. In addition, a major challenge is providing care to patients with chronic illness(es) and a mental health disorder.

All things being equal, if you have several chronic illnesses, and add to that depression and anxiety, you are going to do worse. The challenge of chronic illnesses has come as a byproduct of our success in treating many acute illnesses. There has been a big increase in life expectancy and we've got to catch up to that in treating chronic diseases.

BB&T: What do you see as the main medical weapons — med-tech, drugs, biologicals, or what — in addressing these threats?

Clancy: I would say those are all important and we are so lucky to be living in a country where innovation has been a high priority ... We have a growing armamentarium, but what we're falling behind on is our capacity to identify patients that can benefit from these new technologies, and those who can't.

We need to build a smart system that's going to include different kinds of training of healthcare professionals, and to include smart use of electronic information. If you think about it, Amazon.com has built a system that can routinely tell you what you might be interested in, so we obviously have the capacity to filter this information, to deliver information in a way that's targeted and customized.

But in healthcare we haven't developed the sociology, [the expertise] in knowing how we organize and engineer knowledge, so that clinicians and patients, working together, are getting the information they need right then, just in time.

Over the past two to three years, we've disseminated information to consumers and patients, and it's becoming a bigger priority for us. We will not ever get to the kinds of improvements we need without activated and informed patient. Increasingly people want to make very important decisions on their own. It's far too common that people don't ask questions. One of the best tools we have is getting information to people so that they can manage their own healthcare, and this will improve in the future.

BB&T: If you were to sketch out a five-year plan or 25-year plan, what do you see as the main developments at AHRQ for instance, in the use of new information systems, new ways of organizing the administration of better delivery systems, or new skills that will be required of AHRQ staff members?

Clancy: I'll say five years and so far there's been a great deal of development. I think we've got the right focus area: figuring out the synergies between the areas that we focus on. We are developing and getting better at using the evidence concerning what treatments work. We're taking advantage of health information technology the health IT platform has the greatest potential for delivering the best information for patients in real time. We're developing and using better evidence concerning what treatments work.

I think in terms of patient safety we're hitting the right priority areas. And better IT systems will make a big difference here, in helping us to systematically examine what kinds of errors are being made, to move upstream and present that information to clinicians so that errors can be prevented.

In terms of skills that will be required one of our challenges is communicating what we've learned to the right people. We're very good at supporting and investing in research that will make a difference, but communicating that effectively is a work in progress.

BB&T: America currently is undergoing a vigorous debate concerning the need for broader healthcare insurance coverage. Do you personally or does the agency take a position on the best method or methods for doing this at the politically or governmentally?

Clancy: No, AHRQ doesn't take a position on this. What I will say is all of our work concerning assessing and improving the safety of care would make us strong proponents for the fact that you can't just look at healthcare reform as only an insurance problem. We collect a lot of in-depth information about healthcare that people use [that must be considered.]

The insurance debate has two major facets. One is technical [concerning] the options for expanding insurance coverage. How do we know that expanding coverage will lead to better care and ultimately better health?

[The other area relates to understanding the statistics concerning coverage.] At AHRQ we've got the best information in the country, and we'll continue to excel at collecting that information to provide policy makers the best information about the possible options and their implications

In a two-year period, approximately 70 million people are uninsured for some period of time this averages out to 48 million people uninsured in a given year. So these are all very different sets of problems. For people who have spells when they have no insurance, there are various programs to tide them mover. For others the needs will be greater.

BB&T: AHRQ recently launched an initiative design-ed to aid the states in addressing the expansion of healthcare coverage. How will this work?

Clancy: We sponsor a household survey that continuously reports on insurance coverage, who is enrolled and from multiple different insurers. In a number of states, we have enough of a sample, to help them work on estimates for their states ... [We are] likely to see more state innovations in terms of expanding access along Massachusetts lines. The states won't take all the same path but we need to act now we can't wait for the federal government and they need good information to understand the implications for mandating a combination of strategies. [Our information offers] a decision tool. We aren't going to tell people what to do. This is a tool they can use to figure out what are the implications. This isn't just numbers on a piece of paper, it's actually dynamic, it's a model.

BB&T: Following your tenure at AHRQ, what would you like people to look back on and point to as your most important accomplishment at the agency?

Clancy: Two areas very important to me. One is that we've shifted and are maintaining a focus not just on best research but making that research available, in a usable form, to improve care. The other concerns variations in care. The variations we see for people are mostly among those who are poor, not well educated. The disparities are pretty tragic and a disgrace for this country. We have the opportunity to report on these disparities, and the news is getting a little better on this front but it's slow; improving quality is slow. When everyone gets the best quality care, that will be a big accomplishment.