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Remarks by Carolyn M. Clancy, M.D., Director, Agency for Healthcare
Research and Quality
Lifestyle Panel, Boston, MA, September 7, 2007
Thank you, Dr. Ulene. I've seen you so many times on television that I feel like I
should call you Art.
I can't tell you how pleased I am to be here today, and how happy I
am that AARP chose my home State for their annual meeting.
I grew up in Wellesley, about 15 miles west of Boston. I attended medical
school at the University of Massachusetts, and Earth, Wind & Fire was big!
Their song, "Let's Groove Tonight," is one of my favorites.
In fact, I was surprised when I first learned that they were here. Why would
Earth, Wind & Fire be playing at an AARP event?
And then I remembered—they are just as old as we are! They're
all old enough to be card-carrying members of AARP!
Speaking of which, I wonder if Kirk and Michael Douglas joined AARP as part
of some father-son plan?
The good news is that, like all of us, Earth, Wind & Fire, the Douglases,
and the other celebrities here with us this week are at the top of their games
and, while there is a lot of serious business to be done at this meeting, it
will be great to be entertained by peers who are among the best at what they
I look forward to events like this. In Washington, we are constantly working
on making the system better and, in those conversations, we don't always
talk specifically enough about what it all means.
Clearly, the goal is to make the system better for all of us. At AHRQ, our
mission is to support research that improves the quality, safety, efficiency,
and effectiveness of health care for every American.
Yet, I think there are times when it might be constructive—it might
help move the debate along a bit quicker—to focus more on the intensely
personal nature of health care.
People in the United States are concerned about their health care, and the
research suggests that they should be. What makes this anxiety particularly
troublesome is how little we really know.
We know that poor quality care is an issue that must be addressed, but for
those of us who need the system, the real issue is much more personal. The
real issue here is, how good is my health care?
At this point, I'm not sure we have an answer for most Americans.
I have a case that I would like to share with you briefly. It involves a woman
who I will refer to as JG.
JG died of stage III melanoma 2 years ago. She received very good care
in the year after the diagnosis. After that, the consultations and advice apparently
faded over time, and there were significant differences of opinion about the
quality of care she received leading up to her death.
Her physicians believe she received the best possible care. Her family's
evaluation of the experience is very different.
I will be the first to admit that, when I began my career in medicine, the
idea of patients evaluating physician performance probably was not something
that we spent a lot of time talking about. The idea of people having expectations
about their care was something we probably thought about even less.
Today, neither are options.
Patients have easy and quick access to the same kinds of information that
we do. They see information about their diseases or conditions on television.
They read about them on the Internet on in the newspaper. At times, they know
about new drugs for treating their conditions before we
How many of you have looked online for medical information for yourself or
a loved one? Raise your hands.
To me, this is an important and necessary dynamic. We all need to spend
more time learning about our illnesses and ailments so we can help manage our
long-term health care. The days of telling our doctors what hurts and leaving
the rest up to them should end post haste!
Eventually, the melanoma spread throughout JG's body, and she was admitted
to the hospital. The next 4 weeks of her life were a nightmare. The hospital
seemed to do everything possible and 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 shy about seeking answers.
A couple of weeks later, she was transferred back to the hospital, where she
died, with questions lingering about whether there was some kind of an error
in the diagnosis of a complication.
The family wrote an angry letter to the doctor, who—fortunately—was
very gracious. He knew JG well, and he spent a considerable amount of time
after her death talking with them.
JG received care from multiple sources, all coordinated by her primary care
physician. The system was good, 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 primary guardian for her two
JG's situation points to one of the main challenges in improving patient-centered
That is, the increasing difficulty of primary care physicians to keep track
of what everybody is doing for their patients. Physician workloads are such
that we can devote only minutes to keeping up with the status of each patient.
At AHRQ, we are encouraging patients and their family members to ask questions
about their care, because we think patient involvement is a very important
component of the evolution of this country's health care system. Particularly,
for people with chronic illnesses, the time spent with a physician is a tiny
fraction of the time spent managing the disease.
We launched a public awareness campaign during Patient Safety Awareness Week
in March that encourages people to take a more active role in their health
care. Here is a 60-second version of a TV ad that is running across the country,
including on stations in Boston. So, if you haven't seen it in your area,
you may have an opportunity to see it while you're here.
(After the Ad)
While this campaign was being conceived, we conducted research that showed
patients often feel rushed and anxious, and don't want to bother or offend their
doctors with too many questions during medical appointments. We also found that
patients often rely on memory rather than writing down and prioritizing their
questions. We want to change this.
We want everyone to visit our Web site, www.ahrq.gov and go to the "Questions Are the Answer" button in the upper
right-hand corner, or call our toll-free number—1-800-931-AHRQ—for
tips on questions you should ask your doctor.
The Web site also features an interactive Question Builder that can help you
build a personalized list of questions that you can take to each medical appointment.
All of this information is available at our booth, which is Number 720 in
the exhibit hall; so if you get a chance, please come and see us and we'll
explain more about what we do, and how we can help you increase the quality
and value of your health care.
As a doctor, I believe that the recommendations we make to patients should
be what they would recommend for themselves, if they had the necessary training
This seems to me to be a readily attainable goal, especially with all of the
resources that are available to us today:
- We've got the expertise. The United States has the world's
finest physicians, nurses, and other health care workers.
- We've got the money. We spend more than $2 trillion annually on health care.
- And we've got the latest tools, with new and better ones being developed
all the time.
We are beginning to reap the benefits from advances in areas such as health
information technology, but progress is slow and we've got to find ways
to move faster.
The challenges exist system wide, and the fact that the costs of health care
are rising faster than the quality of the product is a serious issue. It's
It's something that I take personally. When you consider that the difference
can be measured in lives saved, how can it not be
Is there anything on the horizon, or anything that could have been done to
help JG? JG is actually my Aunt Jeanne, and it's unlikely that anything
could have saved her from stage III melanoma. Our family may have had more
comfort in actually being able to monitor her care better.
It's rather ironic that Aunt Jeanne spent most of her life as an advocate
for senior citizens. She was what you would call a real
advocate. On a number of occasions, her actions included engineering escapes from
Of course, that's taking the care of loved ones way beyond
the call, but I think we can all learn something from her zeal for doing the
As we look at the evolution of health care in the 21st Century, the ideal
model for me would be an information-rich and information-sharing, patient-centered
type of enterprise. From outpatient clinics to operating rooms, providers would
have real-time data to help them provide the safest, best, and most effective
This system would be proactive. It would also be responsive to the needs of
patients, and this is where you can help.
Become an advocate for our health care system. Before your
aunt's next visit to the doctor, do some homework. Go to the Internet and research
her illness or condition. Help her use our Question Builder, and take a list
of questions with you.
Former House Speaker Tip O'Neill of Massachusetts used to say, "All
politics is local."
Well, all health care is local too, and in the information
age, anything that you do for yourself or a loved one that needs help, can
help in the overall effort to build the U.S. health care system of the future.
Current as of November 2007