With the looming necessity of cancer centers having a patient navigation process in place by 2015 to receive accreditation from the American College of Surgeons Commission on Cancer (CoC), various constituents of the cancer community have been busy laying the groundwork to help meet the mandate.
OT contacted several oncology organizations and societies to learn more about efforts under way to ensure that institutions and practices would be able to provide appropriate patient navigation services intended to reduce cancer mortality by eliminating barriers to screening, diagnosis, treatment, and supportive care.
As noted in Part 1 of this series, which focused on patient navigator pioneer Harold P. Freeman, MD—who conceived of and coined the concept in the late 1980s as a means to address disparities in health care access among the poor and uninsured—the model provided through his namesake Patient Navigation Institute established in Harlem, NY in 2007 is not necessarily applicable in all situations. The most significant first step in setting up patient navigation services is a needs assessment by each cancer treatment facility.
Daniel P. McKellar, MD, Chair of the CoC Accreditation Committee and Chair-elect of the Commission, and medical director at Wayne HealthCare in Greenville, Ohio, noted that CoC added the new provisions in response to the Institute of Medicine's 2005 “From Cancer Patient to Cancer Survivor: Lost in Transition” report (OT, 12/10/05).
CoC also increased its membership to 47 organizations to encompass diverse viewpoints throughout the cancer community, and credits the American Cancer Society, the Cancer Support Community, the National Coalition for Cancer Survivorship, and LIVESTRONG for providing input from the patient support or advocacy perspective.
“We felt we needed to put in a new standard for patients, but we knew we couldn't come in and put down draconian mandates, so rather than dictating, we introduced the concept, realizing that resources are limited. Our standard does not mention ‘patient navigation,’ but rather a ‘navigation process.’”
Each of CoC's 1,400 accredited institutions will have to determine what its respective communities will need in the way of navigation services to overcome whatever barriers stand in the way of patients receiving cancer care.
This does not necessarily mean having to hire a “navigator” but rather determining what resources the institution has and what will have to be added to help patients overcome health care system barriers and provide them with timely access to quality medical and psychosocial care from before cancer diagnosis through all phases of their cancer experience.
McKellar noted that CoC is developing a number of online resources including webinars and other educational programs as well as a “Best Practices” website (www.facs.org/cancer/coc/bestpractices.html).
“The reaction we received from the cancer community was very interesting,” he said. “We expected negative feedback and actually got very little feedback, with most people asking about costs.”
The Association of Community Cancer Centers (ACCC), with nearly 17,000 cancer care professionals from about 900 hospitals and 1,200 private oncology practices, estimates that its members treat about 60% of cancer patients in the U.S.
ACCC President-elect Virginia T. Vaitones, MSW, OSW-C, an oncology social worker at Penobscot Bay Medical Center's Cancer Care Center in Rockport, Maine, and Diane M. Otte, RN, MS, OCN, Chair of ACCC's Bylaws Committee and Director of the Cancer Center and Dermatology at Mayo Clinic Health System-Franciscan Healthcare in La Crosse, Wisconsin, discussed ACCC's efforts to provide information, education, and resources about patient navigation.
Vaitones, who is also the Association of Oncology Social Work's (AOSW) representative to CoC, described patient navigation as a moving target and said ACCC began looking at the process several years ago using the definition created by C-Change in 2005: “Patient navigation in cancer care refers to individualized assistance offered to patients, families, and caregivers to help overcome health care system barriers and facilitate timely access to quality medical and psychosocial care from pre-diagnosis through all phases of the cancer experience,” the same definition used by CoC.
She said social workers had been involved in helping patients navigate through their health care for years, and that ACCC wanted to do more to help hospitals expand in meeting patients' needs.
Through a grant from Sanofi-Aventis, ACCC launched a provider program for patient navigation in 2008 and developed several online resources (www.accc-cancer.org/education/education-patientnavigation.asp).
“We're not providing a how-to guide but rather a resource for community cancer programs interesting in implementing or expanding patient navigation services designed to dovetail with each program's specific resources, community needs, and strategic objectives,” she said.
Otte, who also serves as the Oncology Nursing Society's liaison to the CoC, spoke on behalf of ACCC: “CoC doesn't want to be prescriptive and wants to leave the standards open,” she said, noting that one of the biggest challenges and obstacles for patient navigation programs is the lack of payment for their services.
Following a 2009 joint think tank on patient navigation involving ONS, AOSW, and the National Association of Social Workers, a position paper on the role of oncology nursing and oncology social work in patient navigation was released (http://www.ons.org/Publications/Positions/Navigation).
The statement used C-Change's definition but changed “quality medical” to “quality health,” and noted that “navigation services can be delegated to trained non-professional and/or volunteers and should be supervised by nurses or social workers.”
ONS President Carlton G. Brown, RN, PhD, AOCN, and CEO Paula Trahan Rieger, RN, MSN, CAE, FAAN, said the society had an ongoing interest in nurse navigation and that the think tank discussions looked at delineating respective roles for others involved in the navigation process.
“We saw this as a newly evolving role with many different ways to implement it and its future expansion to other chronic conditions,” said Rieger.
Brown, Assistant Professor at the University of Delaware School of Nursing, said that ONS is calling for more research looking at optimal outcomes with navigation and wants to continue to see a more multidisciplinary approach. “Our ultimate goal is to make sure patients get through the system and get access to care,” he said.
ASCO doesn't have specific physician or patient resources on patient navigation, but its Conquer Cancer Foundation provided funding to ASCO's Georgia state affiliate to help establish an educational and organizational conference that led to a statewide navigator society.
Lidia Schapira, MD, Assistant Professor at Massachusetts General Hospital (MGH), shared her experiences with patient navigation there. A medical oncologist originally from Argentina and now also Associate Editor for ASCO's Cancer.Net, she said that while many patient navigation programs deal with obstacles related to poverty and lack of social services, the focus at MGH is largely on immigrant populations facing language and cultural barriers.
“I've worked with [MGH Cancer Center Director of Clinical Research] Bruce Chabner to overcome barriers to early-phase clinical trials, and found there's also often a knowledge gap when interpreters don't understand experimental research,” she said.
At ACS, the patient navigation national manager role was recently transitioned from Angelina Esparza, RN, MPH, to Rian Rodriguez. Esparza, now Director of Health Equity, was Co-chair of the Commission on Cancer Committee for the patient navigation standard.
She explained that ACS officially launched its patient navigation program in 2005 with a contribution from AstraZeneca, and currently has 134 sites in 11 of the ACS's 12 divisions, and that so far more than 355,000 patients and caregivers have been helped.
Two years ago ACS hosted the National Patient Navigation Leadership Summit, and an article she coauthored with Elizabeth Calhoun, “Measuring the Impact and Potential of Patient Navigation,” was included in a supplement (http://onlinelibrary.wiley.com/doi/10.1002/cncr.v117.15s/ issuetoc) to the journal Cancer devoted to the topic of patient navigation.
Patient navigation program staff are trained and employed by ACS, receive ongoing training, and have offices based at each cancer center. They meet with patients to determine barriers and help them overcome obstacles to cancer care.
“ACS works with each hospital to determine its needs,” she said. “There are no prerequisites to be a navigator, but most are social workers and nurses who provide information about the medical process so patients can have a conversation with health care providers.”
Rodriguez, the program's new director, said a key role of navigation is preempting barriers: “There's an effort by major players involved in patient navigation for further recognition to receive reimbursement. ACS and other stakeholders are working on a white paper to articulate the importance of patient navigation as an emerging part of the oncology field.”
There is also discussion about establishing a national core competency for patient navigation and a consortium including Freeman's Patient Navigation Institute is looking into best standard practices.
In 2005 the National Cancer Institute awarded $25 million for a Patient Navigator Research Program (PNRP) for minority and underserved cancer patients when Harold Freeman was serving as senior advisor to the NCI Director, advising on minority and underserved communities. Eight institutions received NCI grants to develop innovative navigation programs, and a ninth received funding from ACS, noted Martha Hare, PhD, RN, Program Director at NCI's Center to Reduce Health Disparities and co-team leader for PNRP.
Since recruitment began in 2006 the project has accrued 12,000 participants. “The institutions designed the programs for their communities and the intervention phase ended in 2011. The analysis phase is now coming to a close,” she said.
With funding at an end, it's now up to the principal investigators to develop sustainability plans for their individual programs.
“Our investigators developed data tools and are working to get the data to publication soon,” she said, adding future planning for the program “is difficult now,” and there are no current plans for future research following release of the data.
Part 2 of a 3-Part Series. Part 1, “How Harold Freeman Navigated the System to Take Patient Navigation from Concept to Standard of Care,” appeared in the 3/10/12 issue.