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Life@50+ AARP National Event & Expo

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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 do.

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 do.

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 grandsons.
JG's situation points to one of the main challenges in improving patient-centered care.

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, 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 and experience.

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 very troubling.

It's something that I take personally. When you consider that the difference can be measured in lives saved, how can it not be personal?

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 nursing homes.

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 good work.

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 service possible.

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.

Thank you.

Current as of November 2007


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