Keynote Address, 56th American Association of Respiratory Care International Respiratory Congress
By Carolyn M. Clancy, M.D., Director, Agency for Healthcare Research and Quality
56th American Association of Respiratory Care International Respiratory Congress
Las Vegas, NV, December 6, 2010
It is so great to be here with you in Las Vegas for the opening of the 56th AARC International Respiratory Congress.
As an advocate for patients and families, the public, and the profession of respiratory care, the American Association for Respiratory Care is consistently on the cutting edge in achieving its mission to educate and promote lung care initiatives. Of course, all of us tend to work within our own confines—all with the best of intentions to figure out how we can make the health care where we're working better for patients. But none of us can do this alone. So, it's really a pleasure and honor for me to be here today to talk to you about a number of issues, not the least of which are the roles that can emerge as we begin to transform our health care system into one that meets the needs of the 21st century—a system that's focused on patients and where you, as providers, have all the information you need exactly when you need it.
All of us know that this is deeply personal for the people we serve. My father died fairly recently of a respiratory condition, so I have some very recent experience with the great work that all of you do and the difficult challenges you face. Dad encountered all of the usual issues that come with his condition. He was 82 and he had severe emphysema. He was on home oxygen. He was constantly thinking that if he worked really hard, he wouldn't need that oxygen anymore. So he would test himself. He'd remove his oxygen and watch the color of his hands. When they turned blue again, then he knew it was time to put the oxygen back on.
I'm sure that all of you deal with personal idiosyncrasies like this all the time. And you're to be commended for the role you play to deliver the best possible care for every patient. At the Agency for Healthcare Research and Quality (AHRQ), our mission is to support independent research that's informed by the needs of the people providing and receiving care so that people all across the country can make a wide range of informed choices and, hopefully, we can build a system that makes the right thing the easy thing to do. In many ways, we are at the epicenter of the activity being generated by language about patient-centered outcomes research—also known as comparative effectiveness research—included in both the Recovery Act of 2009 and the Affordable Care Act signed into law last March.
Patient-centered outcomes research compares the effectiveness of different ways to treat an illness or condition. For many situations in modern medicine—diagnosis, treatment, ongoing management, and so forth—we have two or more options. What we don't have is a good source of comparative information that helps us apply all of this fabulous knowledge with more precision to the care of individual patients. Getting there requires rigorous evaluations and studies of multiple approaches to treatments, which can include drugs, devices, tests, surgery, or ways to deliver health care.
AHRQ is the first Agency to have a legislatively mandated center for conducting patient-centered outcomes research. Since 2005, we have received about $129 million from Congress for this kind of work and have published more than 50 different types of products. Some of these are research reviews for clinicians.
A big grant that just got off the ground is looking at the effectiveness of long-acting beta agonists in patients who tend to have a higher risk of side effects. We're trying to figure out more effective strategies for those patients. The Recovery Act included $1.1 billion for comparative effectiveness, or patient-centered outcomes research, so there's a lot of really good news coming, both from the National Institutes of Health (NIH) and from other parts of the Government.
This past March, the Affordable Care Act became law. In terms of patient-centered outcomes research, the law builds on the work started by the Recovery Act. Specifically, there will be a new Center for Innovations run by Medicare and Medicaid, where we're going to test practical applications of better ways to provide care. There are also provisions that strongly encourage various agencies in the Federal Government to work together on quality and provisions built around developing better quality measures, getting smarter about data collection and public reporting, and linking quality of care with efforts to reduce and ultimately eliminate disparities in care associated with patient characteristics.
There is even a provision addressing the need for a "science of improvement"—ways to translate science to the benefit of the patient—because right now we pump out a lot of information and assume that it magically trickles down in precisely the right way for each individual receiving care. The problem is, it's not working so well. The law also established a Patient-centered Outcomes Research Institute. This is a private sector institute that will be working very closely with my Agency and NIH. It's funded by a combination of public and private sector funds. Of the 21 people on the Board of Governors, most are there because they represent patients' needs, specific health care professionals, those who pay for care, and so forth. This is really a new idea that's also called "stakeholder governance."
Another key component in the law is the National Health Care Quality Strategy. How many of you have perused Web sites looking for information that you needed on quality of care? It would be hard to imagine that "strategy" has been a key idea behind many of these incredibly well-intentioned efforts.
The idea is to have a strategy that begins to integrate and align the efforts of the Federal Government, the States, and all of these private sector initiatives. Some of you may be working in hospitals right now that are being required to report on the same condition with slightly different specifications. I'm sorry, but this is not helping us keep our eyes on the ball. This is all about just chasing measurement and record keeping. We can do a whole lot better than that. That's why I'm so excited about the strategies, so we can make it easy for people to do the right thing.
The one home run that I can point to in health care is the Michigan Keystone Project. This project was funded by AHRQ and conducted by a team from Johns Hopkins led by Peter J. Pronovost, M.D. They tested it at home first, and then they went to the State of Michigan, where they worked in very strong partnership with the Michigan Blue Cross Blue Shield Association and the Michigan Hospital Association. They used a fairly simple tool, the checklist, to reduce the occurrence of, and mortality from, serious bloodstream infections associated with central lines in ICU patients. The genius of this checklist was that it was pretty adaptable. So, small rural hospitals could use it as well as ICUs at the University of Michigan.
Now, long after the grant ended, they have sustained the dramatic improvements in care that resulted from their efforts. But we need a lot more projects like this one to improve health care quality. Donald M. Berwick, M.D., M.P.P., who's now running the Centers for Medicare & Medicaid Services, once said, "In the end, only those who provide care can improve that care." That's why, when I say that we're very serious about providing you with the best possible information, I mean it from the bottom of my heart, because all of this has to take place at the front lines of care. It's about leveraging the best possible evidence and information at the bedside and making sure patients understand what they need to do to control their conditions after they've been discharged or when they're on to the next phase of disease.
We've all seen uncertainty in the eyes of people who are dealing with respiratory illness, whether it's the patient or a family member. My stepmother was nothing short of fantastic in caring for my Dad. She made it possible for him to continue living at home. Last June she went to visit her daughter, who lives in Washington State, for 2 weeks; so my Dad went to stay with my sister. I had been trying to educate my siblings about chronic illness and what was going on with our father, but they were not listening to a word. So I talked to a physician friend who said, "Don't call your sister till day two," which is what I did. What was she the most freaked out about? The oxygen, right? Once they got it home and could get it working, she was fine. But that initial encounter can be pretty traumatic for everyone.
It is extremely important for respiratory therapists to become more engaged in coming up with strategies to improve the patient's experience. It's very likely that plans, programs, and approaches you currently use would be helpful to colleagues in other settings and geographic locations—if they know about them. But when it comes to figuring out what works, the only thing we know for sure is that there's no real way to know for sure, unless we're actually measuring and checking our progress.
Early in my career, I was working in Richmond, VA, juggling teaching, research, seeing patients, and being medical director at a primary care clinic where the vast majority of patients were uninsured. Our aspirations and intentions were beyond magnificent. Our delivery of care was not. We had very few resources. Most of the physicians didn't really understand where most of the people in our clinic lived in any sense of the word. And a third of the patients came from rural areas. So the idea of making an appointment or followup diagnostic test didn't have a lot of meaning. They came in when they could get a ride.
Interestingly enough, we also had a home care team, and I occasionally went out with them to make visits. 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 really matter that the "m" was missing in "smoking" or that this was not a terribly elegant sign. It worked. No one with a lit match was going to go through his door. It's these unique kinds of experiences that cause us to become interested in creating policies and practices that create consistency and quality of care.
Patient-centered outcomes research is currently getting a lot of attention. But it's only one of the topics that my Agency is engaged in, for we have funding for a variety of research projects. So, the possibilities, for those of you who are interested, range from small conference grants for training and education to studying the effectiveness of treatments for complex patients or creating and evaluating different applications of health information technology. All of the projects that we have funded are on our Web site (www.ahrq.gov), but when we looked across our database of over 800 projects, we found very few on respiratory conditions, and none were submitted by respiratory therapists.
The Institute of Medicine released a top 100 list of priorities for comparative effectiveness research about a year and a half ago. Again, respiratory conditions were not very prominent on that list.
So, I'm thinking that we can't hear you now, and maybe we should be hearing from all of you much more often. Because I would guess that each of you could put together your own list of research questions and projects that you'd like to see. For example, I can't help but think about all the people out there who don't know how to use their inhalers. Or how many don't have asthma management plans. When we report on this in our quality report, 50 percent is about the high water mark. We can do a whole lot better than this.
I'm sure that many of you have used the National Guideline Clearinghouse™, which has no less than 250 guidelines related to respiratory conditions. The clearinghouse is also on the AHRQ Web site at http://www.guideline.gov. The American Association for Respiratory Care maintains four guidelines in the database, and there is a variety of quality measures in a related clearinghouse.
One of the big issues confronting health care right now is hospital discharges. We all know how this plays out: It's time for the patient to go home. The people who are picking him up were told to get there at 8 in the morning and it's now going on 11:30 and they're getting really impatient and threatening to sign out against medical advice. Not exactly the perfect setting for having a calm, thoughtful conversation about what to do once you go home. So we funded a project at Boston Medical Center called the Reengineered Hospital Discharge Project, or Project RED, for short. It uses a virtual nurse, or avatar, named Louise, who takes the patient through 11 reinforcing steps that are shown to improve the discharge process and decrease readmissions.
We also have a DVD to help health care professionals who are not respiratory care specialists provide care during a mass casualty. This project, which was produced for us by a team from Denver Health, is called the Cross Training Respiratory Extenders for Medical Emergencies project, or Project XTREME, for short. There are six training modules that cover topics like infection control, respiratory care terms and definitions, manual ventilation, and mechanical ventilation.
One older study that I also want to mention is the National Emphysema Treatment Trial. Back in the mid-1990s, the Medicare program noticed that a lot more people were having lung volume reduction surgery. The tough part was that some patients did dramatically, unbelievably better. They went from being virtually bed-chair-bound and tethered to oxygen, to running around town, golfing, and so forth, which was fantastic. But it was really hard to predict who was likely to have that kind of response. So we suggested a randomized trial. The study compared patients who received maximal medical therapy, including the best, state-of-the-art pulmonary rehabilitation, versus maximal medical therapy plus lung volume reduction surgery.
Two interesting things happened. One was, within the first year or two of patient enrollments, there was a group of high-risk patients who were actually likely to die faster with surgery. So the eligibility criteria for the trials had to be changed. The other thing that we learned from almost all of the sites was that many patients had never had pulmonary rehabilitation like they were getting now. Some of them felt so good that when it came time to be randomized, they said, "Are you kidding me, I feel great, I'm out of here." So again, it's a reminder about the gap between our aspirations and what happens for patients every day.
Ultimately, this is all about trying to provide the best possible care to patients wherever they show up, and it's about making sure they're armed with information and tools to avoid a return trip. So information is important. But I've learned two things in my own career that I think are even more important. The first is the importance of read back. Early on in my career, I was seeing patients at the free clinic a couple of nights a month. One night I heard the pharmacist next door instructing a patient about the medicines he needed. Then I heard him say something I'd never said to a patient and I'd never heard a medical doctor say—"tell me what you heard." I didn't know the name for this, but I knew it was incredibly important. Nothing could be more important than "tell me what you heard."
The second important thing is that information is helpful, but not the end game. What really matters is if patients believe that what they do makes a difference. Like the No Smoking sign that was misspelled. That patient knew what to do—so what if he misspelled it?
In closing, I have some ideas that I think might benefit you, your patients, and possibly the health care system overall. First, I think all of us need to be even more proactive than we already are. In the current environment, the people at the bedside are the ones who can move the needle significantly by leveraging and applying the best possible evidence-based medicine more effectively. Secondly, this means that you need to speak up and ask questions. If you think an order is unnecessary, you should find the evidence that supports your recommendation and let the team know that there are alternatives. If you don't have the research you need, or if you have an idea for a project that would help you serve the patients better, check the AHRQ Web site and see if you can find an opportunity to help get it done—or if you're not comfortable doing a project yourself, let us know about the idea and we'll see if we can get it done.
Your involvement and vigilance as respiratory therapists—professionals on the front lines of care—will be so important in ensuring that we all make the most of the resources and tools we currently have to make the system better. Together we can make a dramatic difference in the lives of our patients and begin to close the gap we confront all too often between what we aspire to for our patients and what actually happens in everyday life because of the systems that we're trapped in today.
Again, in the end, only those who provide care can improve that care.