On the right path
Thanks to patient navigators, many cancer patients can focus on the most important task of all—healing
As she washed in the steamy spray of her morning shower last November, Connie Riddle’s fingers found a life-altering bump: a mass in her right breast about the size of a 50-cent piece.
The disquieting detection led Riddle on a path she wasn’t prepared for. She’s poor and uninsured, and in her small Alaskan community near the Arctic Circle, health care resources are limited.
 Illustration: Guy Billout |
"I was in a state of panic and disbelief," Riddle said. "Even more than the cancer fears, the financial worries were eating me alive. I knew treatment was going to be expensive, and I didn’t want to burden my kids. But I wanted to live."
The 49-year-old sought a second opinion at the Seattle Cancer Care Alliance. She was scared and overwhelmed on one of her early journeys to Seattle. Looking for a place to park her suitcase and weary self between clinic appointments, she wandered into the SCCA’s Patient and Family Resource Center, where Sara Blackmur welcomed her.
Blackmur is a patient navigator, a term that was unfamiliar to Riddle. All she remembers from that first meeting is Blackmur’s bright smile, which matched the sunny yellow walls of the resource center. She also didn’t know that Blackmur would become one of her biggest allies—a steady guiding hand that gently led her through a maze of mounting stress.
Patient navigators are relatively new to health care, members of a growing movement centered on improving patient care. Where they have established roots, patient navigators have become priceless supporters of cancer patients caught in one of the most complex health care systems in the world.
And their success in particular with underserved populations, many cancer experts believe, shows the potential to improve cancer care for every patient.
Mapping a course of action
Think of a patient navigator as a highly specialized concierge—someone who knows all the ins and outs of cancer care. Patient navigators work with patients from pre-diagnosis through all phases of the cancer experience.
 Patient navigators Stephanie Wichmann and Sara Blackmur |
Her work is part of a spectrum of support designed to reduce health care disparities and improve the survival rates for cancer patients. Navigators are also working with cancer researchers to reduce barriers to participation in cutting-edge clinical trials and to accelerate the pace of turning lab discoveries into solutions for people with cancer. Together, they represent a concerted effort by scientists, clinicians, cancer survivors and the federal government to ease the suffering of cancer patients.
Blackmur’s position exists thanks to a partnership between the SCCA and the American Cancer Society. Though she has a background in social work, she does not replace other members of a patient’s health care team like clinical social workers or case managers.
"It’s a collaborative approach," Blackmur said. "I help patients find good, reliable information about their diagnosis and treatment options."
Last year, she found information and/or support services for nearly 400 patients and caregivers. While her focus is on the medically underserved, Blackmur readily provides help to anyone who needs it.
"I’ve learned not to assume anything when people come in," she said. "Some people have very, very basic knowledge of cancer and may not know the difference between chemotherapy and radiation. Their needs are obviously going to be a lot different from patients who are physicians who want to look at oncology textbooks and get in-depth information."
For Riddle, meeting Blackmur was the beginning of hope.
"Sara feels like an angel sent to me," she said. "It’s unbelievable to have someone within the medical system come alongside you, anticipate your needs, hear your concerns, and offer help."
Blackmur seemed to be there every step of the way, connecting Riddle with a program to help her cover her medical expenses; helping her select a wig after she lost her hair to chemotherapy; and meeting with Riddle’s sons to answer their questions, too.
"Without Sara, this would have been a really long and miserable road," Riddle said. "I can’t say enough about her. She just put a whole new lift in my step."
Navigators make a dramatic difference
Harlem Hospital’s Dr. Harold Freeman launched the first patient navigator program at the New York hospital in 1990. Frustrated by the large number of women he’d seen with late-stage breast cancer, the surgical oncologist realized that many of his patients weren’t being diagnosed earlier because of barriers like lack of health insurance, competing priorities, and confusion over proper testing and treatment.
"Poverty should not be an offense punishable by death," said Freeman in a 1981 report to the American Cancer Society.
Freeman went on to implement a program pairing nonmedical professionals with patients to guide them through the health care system.
Navigators made a dramatic difference at Harlem Hospital. Between 1995 and 2000, five-year survival rates increased from 39 percent to 70 percent, and late-stage cancers dropped from 40 percent to 21 percent. The program was so successful it became the basis for the 2005 Patient Navigator and Chronic Disease Prevention Act, a federal grant program to establish patient navigator programs in low-income and rural communities nationwide.
There is now some form of patient navigation at more than 200 cancer care programs nationally. Patient navigation takes on different forms in different communities, as dictated by the needs of the patients and the structure of the organizations in which the navigators work. Patient navigators have worked in the Seattle area since 2005.
Research is being done to measure the benefits and cost-effectiveness of patient navigation programs. One such study, published last year in the Journal of Urban Health, looked at the effect of patient navigation on time spent waiting for a diagnosis, anxiety levels, and patient satisfaction in urban minority women with abnormal mammograms. The study found that the women who had the help of a patient navigator received their diagnosis faster; had significantly less anxiety, regardless of their diagnosis; and reported improved patient satisfaction.
A 2006 study, published in the journal Cancer, tracked the use of patient navigators to improve cancer care and clinical trial access for minority and low-income patients in south Los Angeles. The researchers found that such support had a positive effect on the patients’ experience, reduced barriers to care, and increased clinical trial participation.
"I think navigation is going to become an increasingly important part of cancer care in general," said Dr. David Khan, one of the study’s co-principal investigators. "Everyone has a different model, every community has different needs and a different set of beliefs that may inhibit optimal cancer care."
An expanding role
While patient navigation helps individual patients, there is also a push on a larger scale to bring patients’ needs to the forefront of biomedical research. And patient navigators are seen as an important underpinning in the process.
After surviving two cancers before she turned 40, Deborah Collyar was grateful for the research leading to her successful treatments. She saw traditional advocacy groups and individuals focused on patient support, fundraising, even political advocacy. But she also saw the gaps in biomedical research that slowed the progress of moving scientific discoveries from the laboratory into results for people through clinical trials.
"Basic science is incredibly important," said Collyar, now president of Patient Advocates In Research, based in Danville, Calif. "But we have to have resources put toward translation of those basic science discoveries into results for people."
Collyar and her network of more than 250 cancer survivors and family members partner with researchers throughout the United States and in several other countries. PAIR members, acting as the real-world faces of cancer, serve on advisory boards and committees for the National Institutes of Health, the National Cancer Institute, the Food and Drug Administration and other cancer centers and academic institutions.
From their unique perspective as former cancer patients, they help researchers apply easy-to-understand language to study materials and consent forms, weigh in on ethics discussions surrounding biospecimens, and streamline the clinical trials process so results can be disseminated more quickly into the health care community.
PAIR members advocate for an overhaul of the way research has historically been conducted, with a new emphasis on collaboration and a clear path to move results out of the lab and to people.
"As we get more and more targeted therapies and learn more about how complex the body is and how cancer develops, it’s very clear that nobody can do this by themselves anymore," said Collyar, who praised places like the Hutchinson Center that have made concerted efforts to bolster their translational, bench-to-bedside research programs.
Collyar pointed to collaborative activities that transcend more than one cancer type like the National Cancer Institute’s Specialized Programs of Research Excellence that promote interdisciplinary research and move basic research findings from the laboratory to clinical settings, involving both cancer patients and populations at risk of cancer.
A recent Harris Poll found the majority of people aren’t aware of clinical trials, but when they are, they are receptive to learning more about them and considering them.
Advocacy groups like PAIR would like to see more cancer patients informed of clinical trials, both to help move scientific discovery forward and to offer more treatment options for patients with advanced cancers. And that information could come from patient navigators.
Collyar hopes patient navigators become more involved in learning about clinical trials, not in an effort to "sell" them, but so that patients learn of their treatment options.
"Even someone like me who believes so strongly in research, I do not sell clinical trials to people," she said. "But I try to help give them good, quality information so they can make a decision themselves."
