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
Good morning!
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.
Thank you.
Current as of January 2011
Internet Citation:
Keynote Address: 56th American Association of Respiratory Care International
Respiratory Congress. Speech by Carolyn Clancy, December 6, 2010. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/sp120610.htm
540 Gaither Road Rockville, MD 20850 