As the pandemic continues, health system administrators are renewing their efforts to improve care delivery patterns and meet patients' changing needs. They are also focusing on achieving health equity to close the gaps in care that COVID-19 laid bare.
The Alliance for Health Policy, in partnership with the national program office of the Alliance to Advance Patient-Centered Cancer Care, held a virtual summit to explore best practices and policy implications to achieve excellence in patient-centered cancer care for all Americans. The Alliance to Advance Patient-Centered Cancer Care is an initiative to reduce cancer care disparities in underserved populations funded by the Merck Foundation and led by the University of Michigan School of Nursing.
What emerged from the summit, which included cancer survivors, health providers, researchers, and policy experts, was the need for a model of excellence which considers each cancer patient as an individual who needs a personalized cancer care team that takes into account that patient's physical, mental, social, and financial needs.
Eliav Barr, MD, said he realized the need for excellence in patient-centered cancer care when his mother was diagnosed with Stage III Merkel cell carcinoma. "The impact of the diagnosis was devastating," he said. While his mother received excellent care, "I realized that the high-quality care she received may not be typical," said Barr.
As a physician and scientist, Barr said he is dedicated to the goal that "the best medicine is the medicine the patient can access in a timely fashion." He added that excellent patient-centered cancer care relies on a multidisciplinary model which considers each patient's social determinants of health, such as housing, income, food insecurity, access to transportation, education, and health literacy.
"Perhaps we need a paradigm shift in how we treat cancer patients; to achieve health equity we must do it differently," said Reginald Tucker-Seeley, MA, ScM, ScD, Vice President of Health Equity for ZERO - The End of Prostate Cancer. The racial, ethnic, and age-related disparities revealed during the COVID-19 pandemic and the continuing discussions related to systemic racism motivated him to concentrate his professional efforts on health disparities, said Tucker-Seeley, who was until recently the inaugural holder of the Edward L. Schneider Chair in Gerontology and Assistant Professor in the Leonard Davis School of Gerontology at the University of Southern California. He emphasized that solutions to solving health disparities must rest on a foundation of being seen as trustworthy by patients.
"The fact is we're all individuals; we need to provide complete care," said Roland Matthews, MD, Professor and Chairman of Obstetrics & Gynecology at Morehouse School of Medicine and Director of the Georgia Cancer Center for Excellence at Grady Memorial Hospital. A cancer care system has to take that individuality into account, stressed Matthews, who was named a Distinguished Cancer Scholar by the Georgia Cancer Coalition in 2004.
He noted that what is required for excellent patient-centered cancer care is building a team geared to each patient as an individual. Each member of the team should be at the table for decisions affecting that patient, and each member has to be able to access the patient's record and add information to it, he stressed. He also noted that even patients with insurance may have financial problems that have to be considered by the personalized cancer care team, because "there are different levels of insurance."
A 2017 report from the National Academy of Medicine, Cancer Care in Low-Resource Areas, states: "Team-based cancer care is needed to improve patient outcomes, and will include the involvement of many types of clinicians, including those in primary care, pathology, oncology, nursing, and others." That report described strategies in cancer care delivery, especially to vulnerable populations, that include patient navigation and delivery of nutrition and psychosocial care, improved integration with primary care, as well as telementoring and telepathology services to provide better access to specialists and education in remote areas.
"The system must make sure the patient's voice is being heard," emphasized Matthews. He described starting a patient-centered group of patients, providers, caregivers, and staff which meets regularly and advises the staff at Grady Memorial Hospital. "It was the most important thing we did, in my opinion. Patients are always willing to give information if we just ask them." He said the patients have been "very appreciative" of being included in providing advice; skilled navigators, some of whom are cancer survivors, help in that process. He also noted this patient-centered approach to care is cost-effective, for example, it can reduce emergency room use.
Individualized patient-centered care "is asking a lot of clinicians," said Heidi A. Hamann, PhD, Associate Professor in the Department of Psychology at the University of Arizona and a member of the Cancer Prevention and Control Program at the University of Arizona Cancer Center. She agreed that patients need to be at the table when decisions are made, but stressed that that table has to be acceptable to them so they feel a sense of trust, inclusion, and belonging. Excellent patient-centered cancer care can lead to a better quality of life, noted Hamann. However, she emphasized, "enhanced quality of life is cost-effective, but we have to show that it is."
Physicians "have to have some humility about what we do" and consider all the factors that can affect a cancer patient's outcome, said Wayne A.I. Frederick, MD, MBA, FACS, a surgical oncologist who is President of Howard University. He noted that going into the local community in Washington, DC, to talk to people about their COVID-19 vaccine hesitancy brought home to him the importance of just taking the time and being willing to listen and explain what seems like a very complicated scientific issue.
"COVID exposed the fault lines of cancer care. We need to empower the patient to take control of his or her destiny," said Frederick. He added that the patient's social/environmental ecosystem is increasingly being recognized as an important determinant of treatment outcomes, and must be considered in providing excellence in patient care.
Cancer survivors at the summit affirmed the need for personalized patient-centered cancer care for all. "Where you live should not determine if you live," said Michael Holtz, a long-time survivor of advanced colon cancer. He said all cancer patients deserve a system where "wherever you live, you can get the treatment you need."
Colon cancer survivor Candace Henley was a single mother raising five children when she was diagnosed; she lost her house and car due to heavy expenses. "Everyone deserves the right to fight cancer" and live the best life they can regardless of insurance, she said. What happened to her "should not be happening," she said, noting that financial toxicity causes "an endless vicious cycle of trying to rob Peter to pay Paul." Henley founded The Blue Hat Foundation to raise awareness about colorectal cancer in underserved communities. She said that policies are being created from the scientific and medical perspectives, and not from the patient perspective, and that needs to change.
Agreeing was Jose G. Trevino, MD, Chair of the Division of Surgical Oncology at Massey Cancer Center, Virginia Commonwealth University. "Unfortunately, a lot of the policies are made by people who are not affected by this disease," said Trevino. He noted that what policymakers respond to are personal stories from their constituents, people in their own backyard. Trevino said physicians must become advocates for their patients by participating in policy discussions. "We can't just sit idly by...that's not how policy changes," he said.
Frederick agreed, noting that physicians have an obligation to sit down with legislators and city planners and advocate for their patients. "We can't just point fingers," he said, but need to show up at the table when policies that affect patients are being made. Frederick added that, even as a cancer surgeon, he considers it his responsibility to support policies that prevent cancer, for example.
"It is our responsibility as cancer professionals to get in front of legislators and tell them our stories," agreed Beverly Moy, MD, MPH, Clinical Director of the Breast Oncology Program, Director of Cancer Equity, and a medical oncologist at Massachusetts General Hospital. African Americans who have certain types of cancer are twice as likely to die as people who are White, which is a failure of the health care system, noted Moy, who is also an Associate Professor of Medicine at Harvard Medical School. When it comes to health equity, "In cancer we are really failing our patients," she noted. "Without policy changes, unfortunately, the same things will keep happening over and over again."
Trevino said that to achieve health equity it is important for health professionals to play an active role not only in policy changes, but also in increasing the percentage of Black and Latinx patients who participate in clinical trials, which stands at about 8 percent. He noted that mutations in genes that drive cancerous tumors can be very specific, and a trial with a diverse population could pinpoint a select subgroup of patients with a mutation who respond to an investigational targeted therapy, for example. "Until we diversify clinical trials in our country, we may be missing a great deal of therapeutic success" in some population groups, he noted.
This past June the Association of Community Cancer Centers (ACCC) launched the ACCC Community Oncology Research Institute (ACORI) to boost diversity in cancer clinical trials. The institute is focused on three principal domains: 1) health equity; 2) capacity building to make community research programs research-ready; and 3) research diffusion, disseminating trial opportunities to interested community oncology research programs. As its foundational project, the ACCC has collaborated with the American Society of Clinical Oncology (ASCO) to increase clinical trial participation among patients from underrepresented racial and ethnic groups.
Peggy Eastman is a contributing writer.