By Zoë Christopher, MA, BCAction Program Officer
At the annual San Antonio Breast Cancer Symposium, I was hoping to hear about progress in services that provide improved safety nets for people impacted by a breast cancer diagnosis. We have known for a long time that a person’s living environment, economic status, stress level, and food security impact a person’s health, but these concerns aren’t often addressed at scientific conferences. This year, I attended a special session on the Social Determinants of Health: Impact on Cancer Care, and I was cautiously encouraged. Finally, science is acknowledging that life stressors impact treatment and health outcomes, something holistic practitioners have known for a very long time.
The NCI Community Oncology Research Program and NCI-designated Cancer Centers conducted a survey to determine community-based, organizational, and clinical barriers to care. It focused on three distinct categories that impact health: food insecurity, housing instability, and transportation.
The survey made it clear that the community-based organizations (CBOs) that do exist do not have the budgets or resources needed to address the social risks for cancer patients in any of the three risk categories, with 86-100% of respondents indicating that this is the primary barrier to care. In terms of capacity for addressing both housing and transportation issues, there’s a significant lack of CBOs, with few meeting the cultural and language needs of patients and almost none addressing housing and transportation needs. It appears that the issue of food insecurity has received more support, with 71% of respondents indicating that the number of CBOs dealing with food insecurity is adequate (not excellent, but just adequate). Across the board, there is a significant lack of budget and resources, language support, and standardized processes to connect CBOs with cancer centers.
In the area of organizational barriers to care, the survey revealed a lack of budget to address all three risk categories is the greatest problem. Organizations lack adequate staffing to address housing instability and transportation barriers, and some leaders lack an understanding of the ways in which social risks disrupt or impact cancer care. There are unclear, unstandardized, or absent pathways to connect patients with services and a lack of collaborative relationships with CBOs that can provide services.
In the area of clinician barriers, respondents indicated organizations have insufficient time to address social risks, insufficient information about resources, and a lack of training in how to discuss social risks, along with a reluctance to even broach these subjects. Organizations also lack information on how to connect patients with both internal and external resources. Again, it was perceived by respondents that the issue of food insecurity was addressed slightly more effectively than housing instability and transportation barriers.
This survey highlighted the need for social risks–oriented, systems-level interventions that are tailored to meet the needs of diverse population groups and communities. We are going to need the buy-in of clinicians, healthcare leadership, CBOs, and policymakers.
Moffitt Cancer Center has been studying social determinants of health (SDoH) since 2006, using electronic questionnaires to gather and analyze data from its patients. Tracking the SDoH-related issues of 113,030 registry patients from 2011-2021 revealed that 97% of patients across all races and Hispanic/non-Hispanic ethnicities indicated that their greatest challenge was not having any help during their illness. Its data shows that improving social services connections, housing stability, food access, transportation options, and care management/coordination results in fewer complications, fewer emergency/hospital (re)admissions, fewer premature deaths, increased health care quality, and increased satisfaction with care.
So, when do we stop analyzing and assessing and start implementing solutions? Seeing all the data in the graphs and pie charts that were presented, including the call for more research, I was reminded of the late Judy Brady, a BCAction ally from our beginnings and a passionate activist in the area of environmental toxins. Once, following a film presentation, an audience member praised the work of environmental justice advocates, adding, “We just need more research to support our concerns.” Judy bellowed, “We don’t need more research! We have the information. We need to stop our involuntary exposures.” And I feel that way about addressing the social determinants of health: How do we now alleviate the life stressors of people living with breast cancer?
About the time I was ready to throw my hands up and shout, Sandi Pruitt, PhD, associate professor at the UT Southwestern Medical Center, came to the microphone. Dr. Pruitt conducts research at the interface of epidemiology, behavioral and social science, and health equity. But she’s also the Associate Director of Community Outreach, Engagement, and Equity at the Harold C. Simmons Comprehensive Cancer Center, meaning she has real-world experience with the people negatively impacted by SDoH.
Her presentation focused on food scarcity. From January 2020 to July 2021, she conducted community conversations about cancer; she was interested in the lived experiences of cancer patients. Participants described their cancer experiences, what they felt were the key needs in care, and what messages they wanted to give providers. Breast cancer patients are an emotionally and physically vulnerable population, and when coupled with intersecting and mounting life stressors, their burden works against recovery and good health. The participants asked that practitioners and members of their care teams be more sensitive to actually helping them address the lack of resources for basic needs such as healthy groceries, transportation, childcare, insurance, and access to safe physical exercise. They spoke of the shame and stigma and the cultural taboos associated with lacking resources and needing to ask for help. They wanted to see the promotion of education and clinical trial participation, and they had suggestions for outreach.
In a real-life response to these community conversations, a Community Advisory Board has been created at the Harold C. Simmons Comprehensive Cancer Center to build advocacy capacity, incorporating ongoing, continuous, and intentional listening and response. For people receiving Supplemental Nutrition Assistance Program (SNAP) aid, appointment coordination services reduce the time burden of patients. Community distribution partners are coordinated across the county and hubs facilitate distribution to non-profits, housing units, and places of worship. The Center is also now connected to an on-site “nutrition pharmacy” that offers healthy food items and produce. (Ironically, it’s called the Food as Medicine program — a concept that’s been the foundation of Ayurvedic medicine for 3,000 years!)
The model that Dr. Pruitt presented reduces the stress burden on societal, community, and patient levels. It requires sustainable policies and programs to support two-way communication between patients and facilitators, as well as cross-resource communication. And it addresses the barriers that are most important to the affected community. The model should be replicated throughout the country, and again, we’re going to need the buy-in of clinicians, healthcare leadership, CBOs, and policymakers.
We know the systemic environmental, behavioral, social, clinical, cultural, and psychological factors that cause disparities in healthcare. We know that an individual’s non-medical, social, and economic circumstances impact their ability to remain healthy or recover from illness. And we know the social determinants of health that create stress-filled lives.
Imagine the progress we could make if half the money poured into researching SDoH had been spent on solutions? If we didn’t compartmentalize to such a degree that the whole person and their lived experience is overlooked? If public health were a priority over profit? If we got a lot better at caring for one another?
For years, I worked for two different physicians focused on preventive medicine in private practice. It was a team effort to manage their time because they spent whatever time necessary with each patient, listening and considering what they heard. Yes, there was always someone in the waiting room complaining about their wait time, but both doctors tailored treatment to the individual and actually practiced the art of medicine. Because doctors are not known for being skilled in the areas of psychology or sociology for non-medical needs, they incorporated the expertise of their support staff, which included a psychologist. These were also the doctors who made house calls on their way home at night.
But those days are long gone. Rarely does a patient get their doctor’s attention for more than twenty minutes. Clinicians cannot be expected to stay on top of all the issues related to the risks associated with the social determinants of health, along with staying up to date on advances in medicine and their specialties. And we cannot expect them to have the psychological skills to engage in deep conversations about highly sensitive topics with each patient. They need teams of compassionate and well-trained people who can envision and implement effective safety nets. This calls for community-based organizations, state agencies, and philanthropists to collaborate on developing training programs for paid patient navigators whose job would be to weave the supportive safety nets of resources that will lift breast cancer patients out of the abyss of stressors they currently face.
We need funders, both private and grant makers, to understand the adverse social determinants of health that need to be corrected. Advocates must pressure legislators to make the necessary patient-centered policy changes in support. In the long run, which unfortunately is not always considered in our society, it will be a win for patients, clinicians, caregivers, and communities alike.