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© Oxford University Press 2006.
NEWS |
Agencies Look to Patient Navigators To Reduce Cancer Care Disparities
When Harold Freeman, M.D., started his career as a breast cancer surgeon at Harlem Hospital in 1967, he began to see a pattern among his patients. By the time they made their way to him, many of them had late-stage cancers. Most of the patients were poor and had received little in the way of preventive care or screening services. He began asking questions and noting the challenges so many people face getting access to care. Thus began his nearly 40-year quest to improve outcomes for the poorest cancer patients.
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"We have, in my opinion, a broken health care system for many," said Freeman, now medical director of the Ralph Lauren Cancer Center in Harlem. "For some it is wonderful, but for many it is broken. Maybe we can't change the big picture of 45 million uninsured, although that needs to be addressed, but the question is what can you do now, under these circumstances, to fix it for these people."
Freeman's answer, pairing up disadvantaged patients who have had little experience with the health care system with a person who helps them navigate the often circuitous health care system, has been slowly gaining supporters nationwide since Freeman set up the first so-called patient navigator program at Harlem Hospital in 1990.
A survey conducted by the National Cancer Institute in 2003 found that more than 200 cancer care programs nationwide had some form of patient navigation, many of them funded by small grants from private foundations such as the Avon Foundation and the Susan G. Komen Breast Cancer Foundation. Patient navigator programs are different from other services designed to reduce health care disparities because navigators are typically members of the communities they serve and are often cancer survivors themselves, said Freeman.
The concept is now getting a major push with $75 million in federal funds administered through three separate programs that will be launched in 2006. The Center for Medicare Services will announce nine pilot patient navigator programs geared toward minority populations. The Health Resources and Services Administration will administer $25 million in pilot funds authorized by the Patient Navigator, Outreach, and Chronic Disease Prevention Act of 2005, signed by President Bush in June 2005. And the National Cancer Institute will oversee $25 million in new grants to nine pilot patient navigator programs.
"There is a major disconnect between cancer research discoveries and the delivery of those research findings in the form of improved patient care," said Roland Garcia, Ph.D., of the Center to Reduce Cancer Health Disparities, which is administering the NCI program. "There are sometimes unrecognized barriers that prevent many Americans from receiving the best quality care. This disparity is not getting better—it's actually growing. This program strikes at the very heart of this problem."
The NCI program will evaluate models designed to increase the number of people receiving cancer screening services, to ensure timely follow-up of suspicious findings, and to provide access to clinical trials, among other goals.
Comparing Approaches
Linda Burhansstipanov, Dr.P.H., executive director of the nonprofit group Native American Cancer Research (NACR) in Pine, Colo., has run a patient navigator program called the Native Sisters for more than 10 years. She and her colleagues recently published a comparison of two navigator interventions, telephone and face to face, in the Denver area that highlights the difficulty of measuring the effectiveness of navigator programs. In the study, which appears in the November 2005 issue of Cancer Control, the investigators tested adherence to recommended mammogram screening in the Denver area after speaking with a patient navigator. They found that more women had received a mammogram 18 months after the intervention compared with a control group, but nearly one-third of their small 157-patient sample was lost to follow-up during the study because patients' phones had been disconnected. The authors point out that 25% of urban-dwelling Native Americans have their telephone disconnected at least 1 month per year, according to a survey done by the NACR.
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For other patients, distance to care is a major issue. In Rapid City, S.D., an NCI-sponsored patient navigator program is targeting breast cancer patients in a 250,000-square-mile area serving the Lakota Sioux population. According to a Medicare survey, patients in the area have one of the highest rates of mastectomy in the country. Program director Daniel Petereit, M.D., says that, in his experience, many patients choose mastectomy because of the daunting task of 200-mile round trip commutes for the 6- to 8-week course of radiation therapy required after breast-conserving surgery. He and his colleagues are trying to remove the distance barrier by offering a shorter course of brachytherapy after breast-conserving surgery that will allow patients to shorten their stay in Rapid City to 1 week.
"We have navigators that live on the reservation that are Native American, that are out there promoting screening, talking about the grant, navigating the complexities of, in their case, the Indian Health Service," said Petereit. "One of the major goals is getting them in here sooner. It's a major problem because so many times they are diagnosed with a cancer 6 months ago but they don't get here until now."
He added that it is too early to be able to assess the impact of the program, which has been running since 2003, but he says that for the most part, evidence of the program's success has been word of mouth.
"The most telling thing I've heard is from our radiation therapists is that they have seen an increase in the number of our Native American patients who are completing their radiation therapy from the time before we were here," said Kevin Malloy, a Native American patient navigator working with the South Dakota project. "From the patients, I've heard that if we weren't here to provide assistance, they're not sure how they would have finished their therapy."
Evaluating Programs
Freeman said the recent flurry of interest in patient navigation can be traced to successes in earlier pilot programs, but those successes have been for the most part anecdotal. Even he concedes that little is known about whether patient navigators are actually helping to reduce health care disparities.
One of the only studies to review the effectiveness of patient navigation, published in the August 15, 2005, issue of the journal Cancer, concluded that there is not enough published, peer-reviewed literature to evaluate whether patient navigation works.
"Our intention was to do a review article that would assess what's known about the effectiveness and impact of navigation programs, but as we started to do that we just found that there wasn't a lot of very good information out there," said Daniel Dohan, Ph.D., a health policy researcher at the University of California in San Francisco. "The challenge there is that by their very nature the impact is very diffuse and it's not exactly clear how you measure it. ... What you really need to be doing is comparing clinics, but finding comparable clinics may be a challenge."
The NCI took a first step toward ensuring that data collected in its pilot programs will be comparable by gathering the principal investigators together at a November 2005 meeting in Bethesda, Md., during which they ironed out common definitions for terms such as "abnormality" and discussed how data would be collected. NCI will serve as a centralized point to pull together cost data to look at cost-effectiveness of the various programs and approaches, Garcia said.
"I think getting the answers that will stand up to bench research standards is going to be difficult, but that's the reality of community-based research," said Joshua Jones, M.D., principal investigator of the Northwest Portland (Ore.) Area Indian Health Board, one of nine new grantees. "The idea is to combine data from the various programs in a way that is scientifically legitimate to get the kind of power to demonstrate some of the improvements."
Garcia said that, despite the difficulty with assessing the effectiveness of patient navigation, it's an appealing concept that many in the health care system are clamoring for.
"We're hearing from a lot of physicians," said Garcia. "The physicians want it. It's a quality-of-care issue. Patients [with navigators] are going through the system a lot quicker and they're a lot more satisfied with the experience. The doctors are happier because they catch the cancer earlier; the patients are happier because they can understand the system."
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