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Carolyn M. Clancy, M.D., Director of the Agency for Healthcare Research and Quality (AHRQ)
Keynote Address for the American College of Physicians, San Diego, CA, April 19, 2007
Thank you, Dr. Kirk.
It is a pleasure and an honor to be before this group at a time when we are in the midst of an evolutionary period in U.S. health care to enhance quality and effectiveness system-wide. Throughout my career, I have always been proud to be a member of the College—but never more so than during the past several years.
Physicians—especially internists—have approached quality assessment cautiously and carefully. Yet the current excitement about the changes that we can and must make in health care are being inspired by physician leadership, and John Tooker has done a spectacular job of collaborating with multiple stakeholders to make sure we get it right. His leadership has inspired many within and beyond the physician community.
There is a lot of activity right here in California. Legislators are working to get their health care reform initiatives through committee by the end of the month. Secretary Leavitt sat down—carefully—with Governor Schwarzenegger here in San Diego last month to talk about the Governor's reform initiative. During the meeting, the Governor signed an executive order to advance the health information technology initiative included in his plan.
This kind of activity is taking place all across the country. 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 people who need the system, the real issue is much more personal. The real issue for them 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. It involves a woman that I will refer to as JG. JG died of cancer—stage III melanoma—2 years ago.
She received very good evidence-based care in the year after the diagnosis. After that year, 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 believe she received the best possible, evidence-based care. Her family's evaluation of the experience was very different.
When most of us here became involved in health care, the idea of a patient evaluating our performance probably was not something that we spent a lot of time thinking about. The idea of people having expectations about their care was something we probably thought about even less. Today, neither are options.
Our 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 or in the newspaper. At times, they know about new drugs for treating their conditions before we do.
Our teaching facilities must be facing similar pressures, in terms of getting residents to think about the potential impact they can have on the bigger picture of care, and creating the capacity to learn from students and residents who have a 'bird's eye' view of all the ways our system fails to meet our aspirations.
With these and other challenges driving a system-wide change in the delivery of health care, I am happy to have the opportunity to discuss two subjects that I and the Agency I have the privilege to direct—the U.S. Agency for Healthcare Research and Quality—see as pivotal to the healthcare evolution we are experiencing:
- Improving the delivery of patient-centered care.
- Leveraging health services research and health information technology to achieve our quality improvement goals.
Melanoma is a particularly challenging disease. When JG was admitted to the hospital 6 years later, after developing some very abnormal symptoms, she was found to have widely metastatic disease. 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.
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 could not have been nicer. He knew JG well. He spent a considerable amount of time after her death talking with her family and he was very comforting to them.
But, at the same time, there has to be a better way to provide patient-centered care. We will never satisfy everyone all of the time, but we need to continue—even accelerate—our work on addressing the differences between the expectations of the physicians, and those of their patients and families. To do this, we need candor and compassion: candor about how we are actually doing and compassion for the patients we serve and their loved ones.
JG received care from multiple sources, all coordinated by her primary care physician. This is a good system, 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. Granted, melanoma is especially difficult to overcome, so the 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 primary care physicians to keep track of what everybody is doing for their patients.
One of our physicians at AHRQ also works at one of the clinics in Maryland, and she spends hours every Friday trying to determine what kind of care her patients have received during the week. She needs to know what they've received, what they've been told. Sometimes the other doctors leave notes, but she doesn't get them in time to make a difference.
The best days are those when her patients are seeing doctors that she also sees, and they have time to share information. On these days, she also talks to family members and ends up with a good knowledge of the patient's medical history and status. Some of you may recall a time when this kind of a good day was the norm. When things are not going very well, it's generally because something has taken place that she is not aware of or couldn't catch up to in time—usually because there is no easy way for physicians to keep everything together.
This is where health information technology comes in. Health information technology is about making the right thing the easy thing to do. And this can happen in a variety of ways:
- Electronic health records make health information available when and where it's needed.
- E-prescribing can improve safety and reduce medical errors.
- Clinical decision support can be available "on demand" to help doctors and nurses diagnose or treat a difficult condition.
- And personal health records can help doctors and patients work more closely together.
Health IT can also help us do much more. In the clinic, it can give clinicians real-time feedback to help them continually improve the effectiveness of their care. In the community, it can help bring stakeholders together to look at patient outcomes and work toward improvement. In medical schools, it gives students access to the very latest data and information. And at the broadest levels, it has the potential to be a kind of information "nervous system" that enables us to learn directly from the health delivery system itself.
I'm talking here about moving toward a future of personalized health care, where we provide the best treatment and prevention for each patient, based on highly individualized information.
At the Agency for Healthcare Research and Quality, we recently released our annual reports on health care quality and disparities. The primary message is that the overall quality of the U.S. healthcare system is improving at a rate of about 3 percent annually, and we are missing important opportunities to help Americans avoid disease and serious complications.
Our mission at the Agency is to support research that improves the quality, safety, efficiency, and effectiveness of health care for all Americans. So accelerating the pace of improvement is something that we take very seriously.
Our research tells us that, at the current rate of improvement, it would take us about 20 years to close the gap between the best quality care and what we receive today. I'm sure none of us wants to wait that long. It has also become clear to us that, as the complexity of our system grows, we will need to leverage health IT to improve patient safety and health outcomes.
There are millions of us in this country who provide health care or related services. But there is nothing that connects us to a system, like all of the other systems that we now depend on.
We have come to trust technology enough to do banking online, to pay bills online, and to shop online.
In our sector, 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.
It is not uncommon to see hospital staff members with arms lined with yellow post-it notes, so that when they get back to their stations they can enter all of the information into the system. And it is the norm that most of us cannot know easily how our patients are doing once they have left the office, been discharged, or referred to a colleague. At one of the institutions where I practiced, I used to say that we had a paperless practice—not because it was electronic, but because we actually couldn't find the paper.
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.
There are some issues with funding. Dr. Kirk made some very valid points in her testimony last month before the House Subcommittee on Regulations, Healthcare, and Trade. As she said, the start-up and maintenance costs of health information technology are expensive, particularly for smaller practices. And, most practices in the United States consist of less than five physicians, so there often are significant challenges to realizing a return on investment.
We have a long way to go. The question we have to ask ourselves about the massive undertaking that will be required to automate and personalize the system is, "Is it worth the expense and the effort?"
How much better can healthcare be with a system that allows us to better educate our patients about their medical conditions, and to work in consistent, evidence-based partnerships that help us respond —even be proactive in some instances—and to learn?
Today, learning from clinical experience is pretty much a solitary, albeit dedicated effort. Getting to care that is consistently high-quality, safe, and effective is, as John Eisenberg often reminded us, a "team sport."
The next time you pull up to an ATM machine on a Sunday morning and do your banking from your vehicle, think about what that kind of real-time access would mean for our practices, for medical research, and for training medical students and residents.
I have often wondered how much teaching and residency has changed since I came through. After my most recent visit to an academic medical center, my sense is that the technology is different and the antibiotics are better. Otherwise, my experiences I think may have been very similar to what is happening today.
Residents are evaluated on their competency and systems-based approach to care. And they're being evaluated by other young physicians. There are some very nice curriculums around, but in a lot of instances, we have young physicians evaluating residents based on the skills and systems-based thinking, without really understanding all of what that entails.
In fact, I would say that many, if not most, of the breakthrough kinds of medical development are coming from outside of academia. There, of course, are exceptions, but I don't think these centers own this realm as they once may have.
We all want to do good things. I think that is why most of us got into medicine. We now have an opportunity to take a giant leap, by supporting the creation of a system that has the potential to completely change the way we practice medicine.
With the American College's reputation as a respected opinion leader in the field of medicine, we have the influence and resources to help turn the culture of health care around. For example, you could expand your efforts to redesign training for internal medicine. You could help to generate a campaign to spur big-picture breakthroughs at medical centers. I'm sure you will continue to broaden you efforts to help get financial help for small practices looking to implement health IT.
People in the College including John Tooker have distinguished themselves by engaging the organization in activities to broaden health care access, improve medicine's regulatory environment, and be more responsive to changing informational needs.
The ACP is involved in a multitude of activities and has the capability and expertise to do even more. And, there are institutions like AHRQ to help. We helped to fund a 3-year project that the College completed last year to develop and test a team-oriented, practice-based continuing medical education (CME) program. The goal was to train teams of doctors, nurses, and office administrators in how to improve quality of care outcomes for patients with chronic disease. The program then developed a business case that is designed to promote similar practice-based CME activities by the ACP and other professional societies. The program has been very successful and you should begin to see some of the results published in the near future.
At about the same time, AHRQ was also supporting another ACP initiative—this one to develop a patient safety curriculum for members, encourage its adoption, and distribute information to the membership on a regular basis. The initiative focused on patient safety in the ambulatory care setting, including the role of patients in error reduction, the importance of communication, medication errors, team training, and the role of leadership in achieving patient safety. This program has reached at least 80 chapters in the United States, as well as Puerto Rico, Central America, and Japan. Both of these initiatives represent a new kind of professionalism that enhances and reinforces the best efforts of individual clinicians.
There are many AHRQ-sponsored and funded opportunities that ACP members can currently available take advantage of. For example, we have four new ambulatory safety and quality funding opportunities pending:
- Risk Assessment in Ambulatory Care.
- Improving Quality through Clinician use of Health IT.
- Patient-Centered Health IT.
- Enabling Patient Safety and Quality Measurement through Health IT.
Information about all of these is available on our Web site, www.ahrq.gov, along with all kinds of additional information on projects and initiatives that might be of some help to you. In the end, it's all about good quality, patient-centered care. People have access to more information than ever before, and they have expectations. Physician workloads are such that we can devote only minutes to keeping up with the status of each of our patients, while managing the expectations of family members. On top of all this, our performance is being evaluated by people including our patients.
Patients are asking questions about their care. At AHRQ, we are encouraging them to do so, because we think patient involvement is a very important component of the evolution of the U.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 at home and at work.
We have developed a new public awareness campaign with the Ad Council to encourage people to take a more active role in their health care.
Here is a 30-second version (MPG; Transcript)
of one of the TV ads that will begin running very soon.
If this works as anticipated, you will likely see an increase in the number of questions that you receive from patients, and I would encourage you to make the best of this chance to engage them, in any way that you can. At the end of the day, the currency of our work with patients every day is information and communication. We have made quantum leaps over the last 100 years, but that is nothing compared to what is happening in the information age, or what will take place over the next 100 years.
The success of our current effort depends on all of us—as individuals, as organizations, as Americans—to work together and share our ideals and enthusiasm for building a viable health care system. A system that is devoid of silos and sectors, a system that helps to create and sustain a culture of quality, a system that embraces advances such as interoperable electronic medical records, e-prescriptions, and all of the other benefits that are becoming available. Getting there will require professional as well as electronic connectivity.
Would any of this have helped 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. She was serious about her business. She was involved in social service and health care, but in many ways, she was battling a system.
And it seems to me that there is a very unique opportunity here—frankly a responsibility—for all doctors to help figure out how we can have a system that would no longer require advocates like Aunt Jeanne, a system that would not require policing and other types of enforcement to make sure that we're doing the right thing, and making the right thing easier to do.
Current as of April 2007