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 diagnosis of cancer can be a life-altering event. Upon receiving the news, patients and their family members can often feel scared, overwhelmed. They may have a hard time expressing and understanding all that they would like or need to know to proceed with treatment.
Immediately after a diagnosis, patients have to make a number of important decisions, and move through a complex network of referrals for further testing and treatment. The Institute of Medicine (now the National Academy of Medicine) found that these medical departments often work like “silos,”  with poor communication between clinical staff from different specialties.
Negative feelings are compounded by what can be an exhausting process, which can unfold over a period of months, or even years. If patients are not empowered to voice their needs and concerns, it can be very difficult for them to regain a sense of control over their cancer journey.
Right now, in the United States, patients continue to face significant barriers to accessing timely and patient-centered care. There is a growing body of evidence illustrating that it is harder for racial and ethnic minorities to receive quality care, even when all other demographic factors are equal. Where people live can also have a big effect on their ability to access care, with studies highlighting specific zip codes where cancer mortality rates remain high, even as national averages decline .
Maybe patients live in rural areas, far from a cancer center. Perhaps they lack reliable transportation to and from doctor’s appointments. They could have insurance that requires high out of pocket costs. They may not have an established relationship with a clinician or provider. All of these issues can prevent a patient from getting an initial appointment or get in the way of the progression of their treatment.
The Alliance to Advance Patient-Centered Cancer Care aims to increase access to care and reduce disparities by bringing together grantee sites and their community partners. By working together as a collaborative, these sites are implementing targeted programs and measuring their impact, informing the conversation around patient-centered cancer care in the process. This multi-disciplinary approach could help determine the best strategies for delivering care that starts with and is responsive to all patient needs.
The overall goals of the Alliance are:
- To promote evidence-based interventions to improve the delivery of cancer care
- Reduce disparities in access to high-quality cancer care for vulnerable and underserved populations
- Improve patient outcomes, including satisfaction with care and quality of life
- Build sustainable community partnerships that advance patient-centered cancer care
- And disseminate key findings and lessons learned to promote best practices
Dr. Christopher R. Friese, PhD, RN, AOCN®, FAAN and Dr. Debra Barton RN, PhD, FAAN from the University of Michigan School of Nursing are leading the Alliance National Program Office (NPO). The NPO supports program efforts and provides leadership in building the Alliance as a national public-private partnership. The NPO is tasked with measuring the real-world impact of these programs, working with the Merck Foundation to identify promising strategies that could serve as a model of patient-centered cancer care nationwide.
Alliance grantees are developing or expanding programs that address cancer care concerns at the patient level, clinical staff level, and institutional level, reaching out to high-needs patients in their communities. Their clinical teams reflect the wide variety of disciplines that are integral components of patient-center cancer care: they are oncology specialists, primary care physicians, mental health specialists, nurses, social workers, nutritionists, and exercise coaches.
The Alliance includes the following organizations:
- Georgia Cancer Center for Excellence at Grady Health System in Atlanta, Georgia
- Johns Hopkins Medicine in Baltimore, Maryland
- Massachusetts General Hospital Cancer Center in Boston, Massachusetts
- Northwestern University Feinberg School of Medicine in Chicago, Illinois
- The Ohio State University Comprehensive Cancer Center in Columbus, Ohio
- The University of Arizona Cancer Center in Tucson, Arizona
Alliance grantees have been enabled by the Merck Foundation to develop and grow a number of programs that have a direct, positive effect on the lives of their patients:
- The Georgia Cancer Center for Excellence at Grady Health System has expanded its navigation efforts, with the addition of Nurse Navigators who are matched with patients at the time of their diagnosis. They help patients resolve any issue that may provide barriers to
- Johns Hopkins Medicine has been coaching patients and their caregivers to communicate their needs more effectively, enabling them to take charge of their cancer journey. This program is integrated with a physician communication skills training that enables physicians to respond to patient and caregivers’ concerns.
- The Massachusetts General Hospital Cancer Center has been focusing on vulnerable populations in Chelsea, Revere, and Charlestown. They are strengthening their patient navigation training standards and developing software-based tools to automatically identify patients in need of supportive services.
- The Northwestern University Feinberg School of Medicine has been working with local community health providers on rolling out their 4R comprehensive plan, which provides a physical care plan to patients as they move between different doctors and to different medical specialties.
- The University of Arizona Cancer Center has been supporting the training of Community Health Workers who are traveling across four counties in Southern Arizona to educate patients on options for receiving cancer care, emotional coping, and tackling the financial impact of a cancer diagnosis.
All Alliance grantees are committed to bringing patient-centered cancer care to vulnerable and underserved patients. In order to help bridge gaps in supportive care, sites have developed a variety of innovative strategies to increase care coordination and communication between different clinical areas.
These efforts can sometimes include navigation services, which guide patients through their first appointments, into cancer care, and into survivorship. Patient navigators can be Nurses, Social Workers, Cancer Survivors, and other committed individuals that are specifically trained to respond to the needs of the local population. Together, they guide patients through every aspect of their cancer care, from working through financial issues, to symptom management.
When developing patient-centered cancer care programs, it is essential to start with an inclusive structure that is responsive to the needs of the local population. Responsive programs are built on the intentional work of dedicated, multi-disciplinary teams, who look beyond the standard course of care to address all patient concerns.
The Alliance brings together grantee sites and community partners who are working together to increase access to care and reduce health care disparities. Thanks to the Merck Foundation, Alliance grantees are now better positioned to meet patients where they are, and together they are working to chart a new course in patient-centered cancer care.
 Institute of Medicine. (2001, March). Crossing the Quality Chasm: A New Health System for the 21st Century. Retrieved from http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2001/Crossing-the-Quality-Chasm/Quality%20Chasm%202001%20%20report%20brief.pdf
 Simon, Stacy. (2018, January 4). Facts & Figures 2018: Rate of Deaths from Cancer Continues Decline. Retrieved from https://www.cancer.org/latest-news/facts-and-figures-2018-rate-of-deaths-from-cancer-continues-decline.html