National Cancer Institute NCI Cancer Bulletin: A Trusted Source for Cancer Research News
April 20, 2010 • Volume 7 / Number 8

Guest Commentary by Dr. Carolyn Clancy

Focusing the Research Enterprise on the Patient

Dr. Carolyn Clancy Dr. Carolyn Clancy

Let’s start with a case study. We have a patient with cancer, a 63-year-old woman named JG, who is treated at a renowned cancer center for stage III melanoma. She has been in good health until her cancer diagnosis, and she responds well to treatment. For 6 years following initial treatment, JG thinks she is cancer free—until she is hospitalized for fatigue and diffuse back pain and tests reveal extensive metastases.

By now, of course, JG isn’t an otherwise spry 63-year-old fighting cancer. She’s 70, she has become the primary guardian of two grandchildren with special challenges, she has already been through one debilitating course of treatment, and the recurrence hasn’t been caught in time. The prognosis is grim. She is transferred to a rehabilitation facility and given palliative care, but the pain only gets worse. Two weeks later, she’s back at the cancer center, this time with cancer cells filling parts of her lungs. Within 48 hours, JG dies.

At the outset, we can agree on three things. We know that JG received excellent treatment initially. We know that JG suffered unnecessarily at death. And, we know that something happened in between treatment and death that shouldn’t have happened.

JG’s case demonstrates that health care quality is not a fixed point on a map. Quality doesn’t happen once; it happens, or fails to happen, over long periods of time, in patient interactions with multiple clinicians, and usually at multiple locations. If at any point the ball is dropped—if a tumor isn’t caught when it should be; if a diagnostic test result is misinterpreted; if a patient does not receive treatment in a timely manner; if she suffers needlessly at death—then the overall quality of care has been poor, even if many of the individual instances of care were very good.

That is the essence of patient-centered care: it is of high quality only when the ultimate needs of the patient are met.

Unfortunately, statistics tracked by my agency, the Agency for Healthcare Research and Quality (AHRQ), indicate that the quality of cancer care in the United States could be much better. Take for example colorectal cancer, which kills nearly 50,000 people a year in the United States, second only to lung cancer. As this publication recently reported, screening is underused despite clinical guidelines. According to the 2008 National Healthcare Quality Report, only 55 percent of Americans age 50 and older receive regular screenings for colorectal cancer, and geographic disparities for colonoscopy and sigmoidoscopy are widespread.

But we are doing something about it. AHRQ is the lead federal agency on a type of patient-centered health research known as comparative effectiveness research, which compares different diagnostic tests and interventions to gauge which works best for whom, and under which circumstances. AHRQ has been conducting this research since 2005 under its Effective Health Care Program, and—together with our federal partners, NIH, and the Secretary of Health and Human Services—we are advancing this research with an unprecedented federal investment under the American Recovery and Reinvestment Act of 2009.

Comparative effectiveness research is built on the understanding that in health care, there is really only one relevant question: not “What is the right treatment?” but “What is the right treatment for me?” This research provides tools so that patients can work with their physicians to determine their own best course of treatment. Accordingly, the Effective Health Care Program produces summary guides based on its comparative effectiveness reviews, tailored for consumers and clinicians. These summary guides are important to patient-centered care because they put the results of research directly in the hands of those who most need the results.

Cancer is one of the Effective Health Care Program’s 14 priority areas, and the program has recently produced several reports on cancer, including a technical brief on particle beam radiation therapy, a review comparing tamoxifen and other medicines to reduce the risk of primary breast cancer in women, a review comparing core needle biopsy to surgical incision biopsy for diagnosing breast lesions, and a review comparing the effectiveness of therapies for clinically localized prostate cancer.

The story of JG hits very close to home for me, because she’s not an anonymous case study—she was my Aunt Jeanne. Would any of these reports, or any currently under development, have helped her? That’s difficult to say. Her story has elements of suboptimal quality of care and poor patient adherence, but it also demonstrates just how challenging a disease cancer is. We have high hopes for the patient-centered research that is being done today, but we should not believe that this research represents a magic bullet for health care.

Instead, this research will become a powerful tool that we can use to help transform our system of care. It is my expectation that these reports and reports like them ultimately will lead to a health care system with patients at the center.

Dr. Carolyn M. Clancy
Director, Agency for Healthcare Research and Quality