Patient Navigation and Patient Assistance Programs in Oncology

Wayne Kuznar

July 2011, Vol 2, No 4 - Patient Navigation


Philadelphia, PA—The medically under – served population needs easier access to healthcare and tools that provide a seamless transition between all phases of the treatment process, from screening through therapy and survivorship. Payers play an important role in the future of oncology and need to be in the decision-making network.

Patient assistance and patient navigation programs aim to provide patients with reliable education to inform their decision-making, but these programs are sometimes referred to as “add-ons,” and they cost money.

“Patient navigation is a concept that evolved in the 1990s,” said Steven Patierno, PhD, Executive Director, George Washington University Steven Patierno, PhDCancer Institute, Washington, DC. “It was originated to access healthcare barriers, and we need to keep focusing on overcoming these barriers.”

The 3 main barriers include structural, socioeconomic, and financial barriers (Table). To overcome these barriers, Dr Patierno and colleagues from 9 centers across the country took part in the National Cancer Institute (NCI) Patient Navigation Research Program, a $29 million program funded by the NCI to study patient navigation. The study focused on narrowing the window between cancer-related findings, diagnosis, and the onset of treatment. It also examined its cost-effectiveness.


After 6 years of research, which is slated for publication, the team developed specific models, including the longitudinal patient navigation model.

“To keep it as cost-effective as possible, patient navigation was envisioned as picking up people at suspicious finding, navigating them to the onset of treatment, and then stopping because it was obviously too expensive to do otherwise,” Dr Patierno said. “So we’ve created this idea of longitudinal navigation that dovetails with outreach. It actually helps people get into and through screening, past diagnosis, and into treatment, and then it follows 2 or 3 years into the posttreatment survivorship period.”

Defining Value in Patient Navigation

Patient navigation has an impact on care and cost, and defining the concept is still a challenge. “As the concept of patient navigation has ‘steamrolled’ across the country, it has morphed into many different things. In some areas, patient navigation has evolved into actually little more than a ‘medical concierge service,’” Dr Patierno said.

“They say, ‘Come to our center and meet with our patient navigators.’ That’s great, because it’s very hard for even intelligent people with advanced degrees to navigate their way through the labyrinth of our cancer healthcare system, but the people who are desperately in need of patient navigation are the ones who are affected by barriers.”

Dr Patierno and Dawn Holcombe, MBA, President, DGH Consulting, and Executive Director, Connecticut Oncology Association, agree that definition is a clear challenge.Dawn Holcombe, MBA

“There is not just one definition for value in patient navigation, and the criteria are not consistent,” Ms Holcombe said. “We can’t define it as a value if we don’t know what it is.”

Certain criteria should be considered in defining the value and quality of navigation systems, and these include education and training of navigators and certification programs, she added. The systems should focus on screening and outreach, barriers, and services.

Additional challenges include lack of reimbursement, HIPAA access issues, care delivery models, and healthcare reform. Currently, the vast majority of patient navigation programs are supported by philanthropy and small grants from foundations, Dr Patierno said.

“The most demonstrable success comes from programs that focus on screening and outreach,” said Ms Holcombe.

For example, 2 hospital-based navigation programs focusing on screening and outreach saw a 30% increase in 5-year survival rates in women diagnosed with breast cancer, and another center reduced the rate of no-shows from 67% to 10%.

The program also demonstrated a decreased wait time from initial visit to the procedure and increased early detection by as much as 50%. “We find that navigation programs can increase screening and adherence to diagnostic follow-up,” she said.

In addition to the NCI Patient Navigation Research Program, the American Cancer Society Patient Navigation Program aims to provide reliable patient education and information to support informed decisionmaking and resources and emotional support, and the Centers for Medicare & Medicaid Services Cancer Pre – vention and Treatment Demonstration for Ethnic and Racial Minorities aims to help minority beneficiaries navigate the health system in a timely and informative manner.

“There are also a number of homegrown models, which you can find at hospitals, cancer centers, physician offices, and through the pharmaceutical industry,” Ms Holcombe said. “But none of them have the same definition” of concept or value.

Ms Holcombe said she believes there is so much variation because each program has a different agenda, a different goal, and access to different patients. “When considering a patient navigation system, one should identify the aim, figure out how the value and results will be measured, identify the target population and scope of services and resources, identify who will pay, and figure out if the patient can receive follow-up care.”

Treatment in the Office SettingLeonard Natelson
Leonard Natelson, Chief Executive Officer, Hematology/Oncology Associates of Rockland, NY, is 1 of 5 physicians in a community oncology practice; he said he does not fully understand why there is a big push to get patients to hospital settings for treatment.

“That’s basically what is happening,” he said. “Some physicians are saying they cannot be bothered with human resources, accounting, and payables. They just want to treat their patients. But you have to create that environment.” By no longer using the “buy and bill” method and by using specialty pharmacies, Mr Natelson is now able to treat his patients in the office.

“That has saved our practice. I have a bigger practice, we offer more service, and my physicians can treat the way they want,” he said. “They do not have the financial impact on what’s going on with reimbursements for the drugs. And this saves our payers a ton of money.

“The biggest issue is giving your physicians an alternative,” Mr Natelson continued. “We have to be able to work with our patients, keep their commutes down, and give them a nice setting to be treated in.”

Patient Advocacy Set Up by Survivors
Monica Knoll, who was diagnosed with breast cancer in 2000 and with ovarian cancer in 2006, founded CANCER101, a nonprofit organization to empower patients with cancer to manage their own care.Monica Knoll

Ms Knoll said that physicians must take responsibility for letting their patients and caregivers know all of the facts when recommending chemotherapy treatments.

“Oncologists should research and share with their patients clinical trial opportunities that are available inside and outside of their own cancer centers,” she said. “They shouldn’t let financial gain win over what is best for the patient.”

In addition, when a drug becomes cost-prohibitive for a patient, it is the oncologist’s responsibility to explain the pros and cons as well as to recommend another drug that will not create financial hardship to the patient and family, she added.

“It’s important that the patient and family are aware that a treatment might offer a 10% chance of increased survival over another treatment, but it also may make the patient so sick that his or her quality of life will suffer greatly,” Ms Knoll said. “Saving lives is one thing, but ending someone’s life with dignity is another.”

Ms Knoll suggested that it is irresponsible for an oncologist to continue to offer treatment recommendations when the pa tient is clearly dying and is no longer experiencing any quality of life. When the time comes, the oncologist needs to gently address hospice and end-of-life instead of recommending another drug and giving the patient and the family false hope. “The more conversations you have with your patients and your families, the easier it gets,” Ms Knoll said. Regretfully, Ms Knoll died on June 20, 2011, a few months after her presentation at the conference.