Rochester Helps the Sick Learn the System

October 25, 2005

When it comes to navigating the health care system, it makes sense for people coping with a possible cancer diagnosis to have a well-trained “coach” available from the day they learn of an abnormal test result to the day treatment ends.

The National Cancer Institute has funded a $3.2 million, five-year University of Rochester Medical Center project that allows researchers to train community health workers to navigate people through phone calls, questions, documents, appointments and the emotional upset set off by a suspicion of cancer. The researchers also plan to teach patients how to communicate more effectively with their doctors, nurses, and other providers so that they fully understand the best treatment options, for example, or whom to call if problems arise.

Although these types of patient-advocacy programs, known as patient navigation, are believed to be useful, they are not widely available and have not been rigorously tested. The University will take a lead role in evaluating how well this potentially powerful tool can work, especially among minority groups, the poor, or anyone known to suffer from disparities in quality of health care.

“One of the reasons that we see disparities in cancer care likely has to do with better social networks among the better off,” said Kevin Fiscella, M.D., M.P.H., associate professor, University of Rochester Department of Family Medicine and Community and Preventive Medicine. “There is truth to the old adage that when you are sick, it matters who you know and whether you are asking the right questions. Navigators fill this void particularly for patients who aren’t as well connected.”

Fiscella’s group will study the experiences of 350 local women with abnormal mammogram results, 250 men and women with abnormal colon-cancer screening results, and 200 people who are ultimately diagnosed with cancer. Consenting volunteers will be divided into two groups: usual care or exposure to a patient-navigation program.

The goal is to find out if having a trained navigator shortens the time between an abnormal test result and a definitive diagnosis, and whether the navigation improves adherence to treatment recommendations, the ability to talk to the doctor, patient satisfaction with care, and quality of life, Fiscella said.

The first patient navigation programs began at Harlem Hospital in New York City more than 15 years ago. However, Fiscella said, several studies continue to demonstrate that African Americans and other racial or ethnic minorities experience more delays, poor communication, and financial barriers to the health care system. Although the local research will address the experiences of all individuals, a key question is whether members of underserved populations derive a greater benefit from patient navigation.

“Any time people go through a period of uncertainty it’s very stressful,” Fiscella said. “But you add to that the stress associated with fear, and not knowing who to call or what to ask or how to manage the circumstances of your own case, it can be truly overwhelming.”

In Rochester, a few groups outside of the University do provide navigation services. AIDS Rochester has developed excellent programs for helping patients through treatment, education, and many other aspects of HIV-AIDS care, Fiscella said. The Women’s Health Partnership also provides uninsured people with advocacy services in addition to free cancer screenings, follow-up care and treatment.

For the first time, the University will evaluate patient navigation in the cancer-care community. Volunteers will be enrolled through the six largest primary care practices in the city, and from specialists associated with the James P. Wilmot Cancer Center at the University of Rochester Medical Center, Highland Hospital, Rochester General Hospital, or the Pluta Cancer Center. Three navigators will be trained.

The University of Rochester Medical Center was one of nine institutions nationwide chosen by the NCI to study patient navigation. Each of the centers has specific goals, but they will also collaborate to develop national policies and guidelines. Fiscella, the principal investigator, also serves as associate director of the Rochester Center to Improve Communication in Health Care.

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Leslie Orr
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