The Alliance to Advance Patient-Centered Cancer Care aims to increase access to care and reduce disparities by bringing together grantee sites and community partners from all over the country. By working together as a collaborative, Alliance sites are implementing targeted programs and measuring their impact, informing the conversation around patient-centered cancer care in the process.
A paper recently published in the Journal of Cancer Survivorship makes a strong case for a unique model of survivorship care founded on primary care. The Johns Hopkins Primary Care for Cancer Survivor (PCCS) Clinic has been successfully operating for four years, helping cancer patients cope with potential health challenges in a multi-disciplinary setting. In addition to providing full primary and follow-up cancer care services, the clinic helps patients manage long-term side effects of cancer treatment such as providing referrals to specialty services, psychosocial support, and community organizations centered on cancer survivorship. Continue reading
Intervention Area: Southern Arizona
The University of Arizona Cancer Center (UACC) has a long-established supportive care program. Engaging in evidence-based psychosocial and supportive care has provided a number of benefits for patients and informal caregivers. The expansion of the Un Abrazo Para la Familia intervention provides additional support to underserved populations, especially monolingual Spanish-speaking individuals.
TUCSON, AZ – Despite advances, patients with cancer still face significant barriers to receiving comprehensive treatment. When it comes to mental health and depression stemming from their cancer diagnosis, lack of adequate screening or detection of symptoms means they often lack access to effective, evidence-based psychological care. Underserved cancer patients particularly (including Hispanic/Latino, low income, rural, and elderly patients) frequently report higher rates of depression and family stress, but they are among the least likely to be able to be referred to specialized services. Patients often identify specific barriers to receiving patient-centered cancer care, including language, geography (travel times to their medical provider), limited cultural competency of their providers, and cost.
Securing Strategic Partnerships that Improve Access to Cancer Care
Assisting underserved patients is an ongoing challenge for many cancer centers across the country. Two institutions on the front lines of achieving health equity have demonstrated creative solutions that improve access to cancer care for underserved patients in a tangible way. The Ohio State University James Comprehensive Cancer Center is able to provide smart phones for patients to monitor symptoms and remain in close contact with their care team at no added cost. The Georgia Cancer Center for Excellence at Grady Health System has secured several reliable transportation options for their patients. Both organizations have leveraged key partnerships with for- and not-for-profit organizations looking to serve the public good.
Intervention Area: Johns Hopkins Clinical Research Network (JHCRN)
BALTIMORE – A multi-disciplinary team from Johns Hopkins Medicine has developed an innovative communications training program designed to encourage active participation in managing cancer-related care. Unlike existing training models, which focus almost exclusively on patients or physicians, this intervention combines the use of technology and long standing research on medical communication to reach all real world participants in a medical conversation. The program involves patients, their caregivers, and physicians, following the notion that all participants in a conversation have the potential to influence its focus and content, and caregivers often have an active role in managing a loved one’s cancer care.
Intervention Area: Northeastern Massachusetts
BOSTON – Most cancer diagnoses begin with a primary care physician (PCP), with PCPs remaining involved throughout the continuum of cancer care. According to a recent study, more than 50% of PCPs had a role in shaping treatment preferences for individual patients. After receiving an initial diagnosis from primary care, patients are usually transferred to oncology for further testing and treatment. If this transition is not properly coordinated, it is possible for vital information to be overlooked, or for patients to miss crucial treatment stages. This is especially true for underserved and vulnerable patient populations, who face significant socio-economic barriers to getting the care they need. The Massachusetts General Hospital Cancer Center’s intervention aims to improve care for newly diagnosed patients on multiple fronts: the TopCare registry can help detect patients in need of additional support, and Patient Navigators are empowered to step in and act as a conduit between primary care and oncology services.
Intervention Area: Chicagoland Area
CHICAGO – As cancer treatments evolve and grow in complexity, it can be very difficult for cancer patients to receive continuous, high-quality care: while the majority of cancer treatment journeys begin with primary care physicians, patients typically move between a wide variety of facilities and specialties throughout the course of their care. They may receive surgery at one hospital, get transferred to a different facility for chemotherapy, and then go back to primary care physicians for information on survivorship care. With each transfer, there is a potential for miscommunication, resulting in care delays and frustration for patients and their families. This fragmentation is especially dangerous for minority and underserved populations, who are more likely to be diagnosed with cancer at later stages (cancers are likely to be more aggressive), have financial challenges, lower levels of social support, poor nutrition, and low physical activity levels.
Northwestern University Feinberg School of Medicine developed the 4R (the Right information and Right care for the Right patient at the Right time) model to provide patients with a clear project plan of their treatment, regardless of how many facilities may be involved in their care or their stage of treatment. 4R care plans include information on cancer care, managing their care alongside other chronic illnesses independent of their cancer diagnosis (comorbidities), preventive care, supportive services, and lifestyle choices. The goal of this intervention is to optimize the coordination, flow, consistency, quality and satisfaction of care and communication among the care team, patients, and caregivers (family members, etc.). With the care plan serving as an “anchor”, patients will be more likely to make use of support services necessary and appropriate for optimal health, regardless of location of care, patient income, race/ethnicity, or other factors.
Intervention Area: Atlanta Metro Area
ATLANTA – The health care system is complex and often very fragmented. Navigating these increasingly advanced structures requires an expert guide. Patient navigators make sure that patients are getting all the care they need, when they need it most. They assist in setting up appointments, making sure patients have all documentation needed to move forward; they follow patients throughout treatment and assist in creating a survivorship care plan; they provide crucial psychological support through the most distressing phases of cancer treatment. The work of patient navigators is especially vital for underserved and vulnerable populations, who often lack a formal support system and may be overwhelmed by the highly technical nature of modern health care facilities.
The Georgia Cancer Center for Excellence (GCCE) has offered a patient navigator program since 2003, designed exclusively for breast cancer patients and facilitated by lay navigators who are breast cancer survivors themselves. GCCE also has a robust partnership with the American Cancer Society (ACS), which provides a dedicated, full-time patient resource navigator and a part-time client navigator to work with patients across all cancer sites. Thanks to support from the Merck foundation, GCCE has since been able to expand their navigator program, developing a protocol to match newly diagnosed patients with a nurse navigator. Patients are connected to a navigator as soon as they receive test results that indicate a suspicious or positive result. The nurse navigation program focuses on areas with the highest number of patients, lung/thoracic and breast/gynecology, however navigation services are available to all cancer patients.
“The health care system is a federation of millions of entrepreneurs with no one in charge. No single entity can command change.”
The National Academies of Sciences, Engineering, and Medicine, recently released a consensus report that outlines several key strategies to implement a comprehensive national cancer control plan. This ambitious program aims to set a precedent that could help inform the control of other diseases. The study was undertaken by the Committee on a National Strategy for Cancer Control in the United States with support from the National Institutes of Health, the Centers for Disease Control and Prevention, and the American Cancer Society. Alliance Co-Principal Investigator Electra Paskett, PhD, served as a member of the cancer control committee.