Carolyn M. Clancy, M.D., Director of the Agency for Healthcare Research and Quality
Association of University Programs in Health Administration (AUPHA) Annual Meeting, Chicago, June 29, 2009
Good evening and thank you very much.
It is with great pride and considerable humility that I stand before you tonight as the 2009 recipient of the William B. Graham Prize for Health Services Research. Many of the previous winners of this esteemed prize are giants in their fields. They are the people who have inspired me throughout my career, and one of my first thoughts upon learning that I had been selected as this year's winner was that my feet are not big enough for this type of an honor.
Just to name a few previous winners, Avedis Donabedian, who set the framework for most contemporary quality measurement and improvement activities in health care, literally, around the world; Kerr White, another pioneer in health services research who was described by the Baxter Foundation as perhaps the most influential figure in the field; and Jack Wennberg, who has spent the better part of the last 40 years documenting the geographic variations in health care across the country. Indeed, President Obama indirectly references his work today.
And there is the late John Eisenberg, my predecessor at the Agency for Healthcare Research and Quality. John was a mentor and close friend long before my days at the Agency. John died of a brain tumor on March 10, 2002, weeks before he would have had the honor and pleasure of receiving this same award. His legacy encompasses the achievements of countless students, fellows, trainees, and colleagues whose work he influenced. This includes many, many people from AHRQ, where his uber-energy, leadership, and vision for the future of health services research transformed the culture of the entire Agency.
It is very clear to me that working at AHRQ has a lot to do with my receiving this award, which I accept on behalf of everyone there. It is no secret—nor is it lost on me—that I am here because of the fabulous work that they do.
Early in my tenure at the Agency, I learned how completely rewarding it is to work with people from multiple disciplines. Now, sometimes we disagree. That's true with all families. But we do it out of a sense of commitment to driving significant improvements in the U.S. health care system. The one constant is that all of us want to make sure the story that we present is factual and complete.
John frequently talked about telling the story of health services research. Of course, he also recognized that in order to get people to listen you had to have a story worth telling. He understood the need for a compelling story line fueled by contributions from multiple disciplines, a constant focus on the needs of those whose decisions could be enhanced by independent, user-driven research and an action that people could engage in for affecting change.
Stories don't have power unless they have the power to change. This fact became clear to me very early in my career, not terribly long after I found out what my calling was to be, or as Bono said in an infamous graduation speech in 2001, "the hole in your heart." Frankly, I have no idea why I wanted to become a doctor—absolutely none—except that I wanted to do something that involved science and people.
Having been encouraged to consider academics, I was very interested in medical decisionmaking. Did doctors make consistent decisions? If not, why not? How did they keep all of this information in their heads, especially for complicated patients?
And then I began juggling teaching, conducting research, seeing patients, and being a medical director at a primary care clinic in Richmond, where 98 percent of our patients were uninsured.
Our aspirations and intentions at the clinic were beyond magnificent. Our delivery wasn't.
We had few resources. The doctors didn't understand where most of the people in our clinic lived. And a third of the patients were from rural areas and could only come in when they could get a ride.
We also had a home care team that I occasionally worked with, and I'll never forget the gentleman on oxygen who had a no smoking sign outside his house that was misspelled. It very quickly dawned on me that it didn't matter that the "m" was missing or that the sign wasn't particularly elegant. It worked. No one with a lit match was getting through his front door.
I found that experiences like this began to temper the kind of research I was doing. I became very interested in policy that would create consistency, because improving care was not going to come about as a result of a lot of people trying harder. We needed a better system.
We still do.
I want to tell you a story. This is a story about a woman I will refer to as JG, who died of stage III melanoma about 3 years ago. Unlike most of my patients at the clinic in Richmond, she had access to the best facilities. And she received very good care in the year after the initial diagnosis.
After that, the consultations and advice on followup apparently faded over time, and there are significant differences of opinion about the quality of care she received leading up to her death. Her physicians believed she received the best possible, evidence-based care. Her family's evaluation of the experience was very different.
Six years after her initial diagnosis, JG developed very abnormal symptoms and was admitted to the hospital. She was found to have widely metastatic disease. The next 4 months of her life were a nightmare. The hospital seemed to do everything possible, but when she was sent to a rehabilitation facility, she had significant and persistent issues with pain management. These issues were not resolved despite the constant presence of her sons, daughter, and sisters, who were not at all shy.
A couple of weeks later, she was transferred back to the hospital, where she died with questions lingering about whether there was an error in the diagnosis of a complication.
So, JG received care from multiple sources, all coordinated by her primary care physician. Yet somewhere along the line, something appears to have slipped through the cracks and she died sooner than expected and before she could resolve transfer of her role as a primary guardian for her two grandsons.
Granted, melanoma is especially difficult to overcome, so the ultimate outcome was pretty much sealed well in advance of her death. But her situation points to one of the main challenges in improving patient-centered care.
That is, the increasing difficulty of keeping track of what everyone is doing for patients at any given time.
Health information technology (health IT) can play a major role in this area. Health IT is all about making the right thing the easy thing to do. The next time you pull up to an ATM machine on a Saturday morning and do your banking from your car, think about what this kind of ubiquitous, real-time access would mean for health care, including your own health care.
Right now, we have facilities with electronic health records that are not linked to other hospitals in the same chain, much less the outside world. So, what we can "see" stops when the patient exits the hospital, and we are blind to the frequent errors and disconnects that accompany transitions in care.
Obviously, electronic health records and other forms of health IT will not solve all of the problems on their own. They are means to an end. When designed, implemented, and used properly, they can help us make the most of our investments in health care. Moreover, health IT can help us apply the professionalism we cherish to transform care for patients.
The same is true for comparative effectiveness research. This research equips us with extremely valuable information about what works best for individual patients.
But it isn't a magic bullet. It cannot advance our health care system on its own. However, when used in conjunction with health IT and other new and existing capabilities, it has the potential to be transformational. I mean, why shouldn't we know more about what works best for patients?
Not long ago, a U.S. senator asked me why hospitals in his State aren't doing better. That's both a very basic and profound question, right? I thought so too, until I tried to give him an answer.
I said at the time, very generally, that there are three main reasons for this:
- They don't know how.
- Nobody's making them.
- The incentives just aren't steep enough to make a difference.
Now that I have had time to think about it, I believe my answer was accurate, but there is much, much more to it.
We're still in an environment where CEOs lie awake at night worrying about the bottom line, rather than the quality bottom line. For them, there is no established link between the two. Of course, there are examples of institutions where this is changing, but, for the most part, the classic research enterprise is not really designed to answer the Senator's question.
We have health IT, comparative effectiveness, efficiency measures, and report cards, Web sites, and magazines that rate quality; yet, at the most basic levels, we often don't even have the capacity to learn from our worst experiences.
We're not well enough equipped to tell these stories on a regular basis. Yet, these are the stories that have power. They are compelling and focused, and you can be sure that they will cause people to take action.
And we're not yet equipped to act on them through the research. Developing a grant to answer the Senator's question is not possible.
To me, this means it is time for us to update the story template—to take advantage of the huge opportunity we currently have to move the needle in a big way.
For decades, we have spent most of our time telling stories about the research itself. Now it's time for us to start thinking more about telling stories about how the research made the stories of other people better—gave them a different ending: a happier ending.
It's unlikely that any of this could have changed the ending of JG's story. JG is actually my Aunt Jeanne, and I would like to think that the hospital and rehabilitation center learned from her case.
It's rather ironic that she spent most of her life as an advocate for senior citizens. Aunt Jeanne was what you would call a real advocate. On a number of occasions, her actions included engineering escapes from nursing homes. She was very serious about her business. She was involved in social service and health care, but in many ways, she was battling a system.
And, as we continue our journey, there are some things we need to remember. First, the U.S. health care system has the potential to be the best health care system in the world. We lead the world in biomedical research. We have some of the world's finest facilities and health care professionals.
Second, we are moving into a different world. People are expecting more from us and we need to deliver value and services in ways that we have not paid much attention to before. Put simply, we need to be more flexible and attuned to the needs of the public, to the point where every person feels they are at the center of everything we do for them.
This is a very demanding proposition and at certain points, the results are not always going to be tangible, dramatic or exciting. There are times when we're not going to be particularly happy with the course of events.
At the AHRQ annual meeting, which is held every September, what excites us most in this area are the emerging stories about the students we are training; how they persevered and, ultimately, were able to reach a specific milestone or threshold.
So, when we become frustrated or uncertain about a particular action or decision, we need to remind ourselves of a few of the essential elements that led to our choice of professions. For example:
- We wanted to heal the sick and help the suffering.
- We wanted to study and understand how the health care system works and to find ways to make it work better.
- Or maybe our goal was to use the power of science to unlock the mystery of disease.
At the end of the day, what we will find is that all of our reasons lead us back to people and the hole in our hearts.
And it seems to me that we have a very unique opportunity here—and a responsibility—to put faces to the figures in health services research, with the goal of building a system that would no longer require advocates like Aunt Jeanne to tell the stories that get people inside and outside of the health care system excited about ensuring that we're doing the right thing and making the right thing the easy thing to do.
Once again, I'm very truly honored and humbled to be receiving this award. Among the highest honors that can be bestowed upon someone is to be recognized by their peers. This is an award and an evening that I will cherish for the rest of my life.
Thank you very much.
Current as of July 2009
Acceptance Speech, William B. Graham Prize for Health Services Research. Speech by Carolyn Clancy at The Association of University Programs in Health Administration (AUPHA) Annual Meeting, Chicago, June 29, 2009. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/sp062909.htm