The keynote address of the Fourth Annual Conference of the Academy of Oncology Nurse & Patient Navigators (AONN+) was delivered by Linda W. Ferris, PhD. Ferris is vice president, Oncology System Service Line, at Centura Health in Colorado and Kansas, as well as chair of the Commission on Cancer (CoC) Accreditation Committee.
The CoC is a consortium of more than 50 professional organizations that is dedicated to improving survival and quality of life for patients with cancer through standard-setting, prevention, research, education, and the monitoring of comprehensive quality care. The CoC Accreditation Committee is responsible for developing and interpreting standards for cancer programs. Accreditation is granted to facilities that voluntarily commit to provide optimal cancer diagnosis and treatment, and that comply with established CoC standards. To maintain accreditation, facilities with accredited cancer programs must undergo an on-site performance review every 3 years. The 1500 CoC-accredited cancer programs that exist in the United States represent 30% of all hospitals that provide care to more than 70% of newly diagnosed patients with cancer each year.1
During her engaging presentation at AONN+, Ferris shared insights and suggestions regarding 2 important CoC accreditation standards that are being phased in for 2015: Patient Navigation Process (Standard 3.1) and Survivorship Care Plan (Standard 3.3).
Patient Navigation Process (Standard 3.1)
Standard 3.1 states “A patient navigation process, driven by a community needs assessment, is established to address health care disparities and barriers to care for patients. Resources to address identified barriers may be provided either on-site or by referral to community-based or national organizations. The navigation process is evaluated, documented, and reported to the cancer committee annually. The patient navigation process is modified or enhanced each year to address additional barriers identified by the community needs assessment.”1
To comply with CoC Standard 3.1 in 2015, navigation programs will be asked to:
- Conduct a community needs assessment at least once during the 3-year survey cycle.
- Establish a patient navigation process that provides resources to overcome barriers to cancer care. Resources can be provided to patients with cancer on-site or through referral to community-based or national organizations.
- Evaluate your patient navigation process each year, documenting findings and reporting these findings to your cancer committee.
- Modify your patient navigation process to address newly identified barriers to care.
When conducting a needs assessment, Ferris reminded the navigators to take advantage of the many resources that are already available to help define your community. Examples of local data sources include the marketing department of your hospital or cancer center, your cancer committee, and your cancer registrar. Registrar data are particularly helpful in learning more information about your cancer population’s age, race, income, education, insurance status, travel distance to facility, and time to first treatment. “Mine your data,” she reminded the audience. (As an aside, Ferris predicted that the role of cancer registrars will evolve as technology advances to allow rapid data reporting and faster data mining. She envisions a future in which cancer registrars support navigators in both identifying specific patients’ needs and developing targeted survivorship care plans.)
Navigators can also access state-specific cancer statistics from the American Cancer Society (ACS), the Susan G. Komen Foundation, and the National Cancer Institute, as well as state governments’ websites. (As an illustration, an internet search for “Pennsylvania cancer statistics” resulted in the state government’s “Cancer Statistics” web page, which allows one to download annual and 5-year cancer incidence and mortality statistics for the state since 2010. These data are provided by county and municipality, and by age, sex, race, primary site, and cancer stage.) “Do not overcomplicate the needs assessment process. This is not a huge initiative. Keep it simple,” Ferris advised.
The primary goal of your needs assessment is to identify barriers to cancer care in your local area. Ferris noted the common barriers to care in communities throughout the United States: lack of insurance coverage, patient fear and/or anxiety, transportation access issues, distrust of Western medicine, poor communication, language barriers, and low health literacy. She recommended focusing on these issues when evaluating your community’s resources and gaps.
Ferris reassured the conference attendees that there is no “right” way to organize your patient navigation program. “Design it your way,” she said. She advised the navigators to customize programs based on organizational structure, community needs, and resources available. She recommended collaborating with social workers, case managers, oncology nurses, physicians, community navigators, other hospital staff, and hospital volunteers, as well as local cancer organizations (ie, ACS, Cancer Support Community, LIVESTRONG Foundation), to design and implement a navigation program.
For navigators who wish to attend training programs, Ferris noted that several effective options are available:
- “Patient Navigation Fundamentals,” University of Colorado
- “Patient Navigation: From Out-reach to Survivorship,” George Washington Cancer Institute Center for the Advancement of Cancer Survivorship
- “Patient Navigation Program,” Harold P. Freeman Patient Navigation Institute
- “Patient Navigator Certificate,” Sonoma State University
- “Breast Patient Navigator Certi-fication Programs,” National Consortium of Breast Centers
After outlining the specifics of CoC Standard 3.1, Ferris shared her answers to frequently asked questions about this requirement:
How can the CoC expect small rural programs to hire a patient navigator to fulfill this standard? CoC does not require rural hospitals or cancer centers to hire a patient navigator if one is not on staff.
Does the patient navigator need to be a nurse? No. CoC does not stipulate requirements for the staff tasked with designing and implementing patient navigation programs.
My cancer program is being surveyed in 2014. What will the surveyor be assessing during the survey? Throughout 2014, surveyors will engage cancer committee members and individuals involved with the navigation process in dialogue and answer your questions. Ferris explained that surveyors will clarify Standard 3.1 requirements and listen to your feedback related to challenges and concerns. CoC is dedicated to evolving this standard (and others) to reflect the realities of the process involved, such that navigators’ input is critical.
Referring to the results of a recent survey of 690 navigation programs, Ferris was pleased to report that 54% of these programs already address the entire Patient Navigation Program Standard (Figure 1). Survey results provided by Nina Miller of CoC; Stephanie Van Winkle of ACS; Nina Wendling of National Coalition for Cancer Survivorship; Chris Gayer and Vicki Kennedy of Cancer Support Community; and Ruth Rechis, Saray Arvey, Haley Gardiner, Gema Lane, Stephanie Nutt, and Kathryn Kelly of LIVESTRONG.
Survivorship Care Plan (Standard 3.3)
CoC Standard 3.3: Survivorship Care Plan is also required for CoC accreditation after 2015. This standard requires the cancer committee to develop and implement a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer who are completing cancer treatment. The process must be monitored, evaluated, and presented at least annually to the cancer committee and documented in minutes.
To comply with CoC Standard 3.3 in 2015, cancer committees will be asked to:
- Develop a process to disseminate a comprehensive care summary and follow-up plan to patients with cancer within 6 months of completing cancer treatment.
- Each year, the process implemented, monitored, evaluated, and presented to the cancer committee.1
When asked to rationalize this standard, Ferris recalled the 2005 Institute of Medicine (IOM) report, “From Cancer Patient to Cancer Survivor: Lost in Transition.”2 The transition of cancer survivors from oncology practices to primary care practitioners (PCPs) has been identified by IOM as a significant area of unmet need. Today, more than 13.7 million cancer survivors need specialized follow-up care that includes monitoring of late effects of cancer treatment, surveillance for secondary cancers, and initiatives that optimize their quality of life.
As context, Ferris noted that literature from the National Cancer Institute defines cancer survivorship as including physical, psychological, and economic issues that start at the point of cancer diagnosis and continue until death. These survivorship issues are relevant to the patient, as well as his or her family, friends, and caregivers (Figure 2).
CoC survey results related to Standard 3.3 indicate that more than half of the navigators queried are “somewhat” to “not at all” confident in their ability to implement its requirements by 2015. Ferris observed that most of the survey respondents want more information about evaluating survivorship care plan processes, tools to develop comprehensive care plans and survivorship documents, and more information about specific requirements of Standard 3.3.
Uncertainty and a need for more concrete details about Standard 3.3 requirements were mirrored by the navigators participating at the AONN+ Conference. In the question-and-answer session following Ferris’s address, attendees focused on patient targeting: Should all cancer patients receive survivorship plans? Can it be a subset? If so, which ones? Concerns about program staffing and the time needed for data collection and reporting prompted these queries.
Ferris reassured AONN+ attendees that they are not alone in their concerns. Navigators throughout the country are feeling “real anxiety” about their ability to comply with this new standard. “You as the cancer committee should decide what makes the most sense [in terms of survivorship plan dissemination]. Each program will be different based on your local resources.” To illustrate, Ferris noted that patients with metastatic cancer in her center do not receive survivorship plans.
In the context of treatment plan preparation, Ferris suggested that navigators, “Make [the patient’s treatment plan] a living document, rather than doing it all at the end when patients have completed all cancer treatments. Collect and document the patient’s treatment experience after each phase—after radiation, after completion of chemotherapy, etc.” When asked who should deliver this information to the patient, Ferris recommended that navigators collaborate with oncologists to communicate the goals and content of the treatment plan summary and the survivorship plan to their patients.
Ferris reassured the AONN+ audience, “Many resources are available,” including the CoC Best Practices Repository (http://www.facs.org/cancer/coc/bestpractices.html), CoC Standards Resource Repository, and the CoC Answers Forum. She explained that her hospital provides patients with cancer a “very simple” 2-page treatment summary for patients, and a 2-page follow-up plan for PCPs. “The information you provide must be clear to the patient and to their PCP; keep it simple for both parties….If you were the patient, what would you want to know? Put yourself in their shoes; what is the right thing to do for them?”
Ferris has worked with electronic medical record (EMR) vendors to design and report relevant patient information in this user-friendly format. While many conference attendees indicated that they have been underwhelmed with their current EMR vendors’ capabilities, several navigators noted success in collaborating with EMR vendors to prepare and report patients’ treatment plans. The topic of working with EMR vendors to facilitate compliance with Standard 3.3 was suggested as an area for AONN+ to address through webinars and at the next annual conference.
The Evolution of Survivorship Services
As 2015 approaches, and as effective strategies for meeting Standard 3.3 requirements materialize, Ferris predicted exciting opportunities for entrepreneurial care providers. She expects PCPs, oncologists, and others to institute various types of cancer patient survivorship clinics in academic centers and community settings. Viable alternatives include tumor-specific survivor clinics run by oncology specialists, primary care clinics that manage care for all types of cancer survivors, and “hybrid” practice models that offer both oncology and primary care services.
When survivorship care models like these come to fruition, Ferris also identified significant opportunities for researchers to evaluate outcomes and characterize best practices: Do patients and physicians associate tangible benefits with survivorship plans? Which survivorship care models ensure consumer-focused, evidence-based medicine for cancer survivors? Robust research initiatives to understand and document experiences of cancer survivors who participate in various care models will be critical. “We know that survivors are not prepared for the persistence of or development of long-term toxicities. It will be key to collect data on these patients to better understand their needs.”
In this context, Ferris cited a poignant article written by Fitzhugh Mullan, MD, regarding his personal cancer survivorship experience.3 In this publication, Mullan describes 3 phases of survivorship:
- Acute stage: This stage includes the time from diagnosis through the end of treatment when the focus is on the actual disease. Navigation and support services available through healthcare professionals and loved ones are especially important to help patients through this journey.
- Extended survivorship: This begins when and if the patient responds to treatment. Patients and caregivers often feel positive, yet uncertain. Fear of recurrence is present. Recovery focuses on the physical, emotional, and psychological effects of treatment. Emotions can be varied and extreme. Because medical services are typically not needed on a regular basis, patients and families often rely on community and peer networks for psychosocial support.
- Permanent survivorship: In this phase, recovery is celebrated. At the same time, survivors must manage the long-term physical and psychological effects of their cancer. Survivors require continued care by PCPs and specialists who have knowledge about long-term (late) effects of their cancer, and their management. Navigators help to develop specific plans for patients’ ongoing healthcare needs.
Extensive resources are available to help navigators prepare Standard 3.3–compliant cancer treatment plan summaries and survivorship care plans. Ferris suggested that navigators review document templates that are provided by the American Society of Clinical Oncology, Journey Forward, Memorial Sloan-Kettering Cancer Center, Prescription for Living Plan, LIVESTRONG, and the Minnesota Cancer Alliance.
Ferris concluded her presentation with a touching quote from Mullan’s 1985 article to illustrate the real value that navigators’ attention to survivorship offers to patients with cancer. “Whatever our wishes, the person who has come through a cancer experience is indelibly affected by it. The Humpty Dumpty idea of ‘as good as new’—a powerfully appealing notion for cancer patients—simply does not pertain. For better and for worse, physically and emotionally, the experience leaves an impression. No matter how long we live, cancer patients are survivors—at once wary and relieved, bashful and proud.” Sharing of best practices to facilitate compliance with both of these new CoC standards (3.1 and 3.3) will remain a focus area for both the CoC and AONN+.
1. Commission on Cancer. Cancer program standards 2012: ensuring patient-centered care. Version 1.2. http://www.facs.org/cancer/coc/programstandards2012.html. Accessed January 20, 2014.
2. Institute of Medicine. From cancer patient to cancer survivor: lost in transition. http://books.nap.edu/openbook.php?record_id=11468. Washington, DC: The National Academies Press; 2006.
3. Mullan F. Seasons of survival: reflections of a physician with cancer. N Engl J Med. 1985;313:270-273.