A Q&A with INFO Associate Professor Amelia Gibson
Education level, food insecurity and access to affordable health services are examples of social determinants of health (SDoH), non-medical factors that influence health inequity. College of Information Studies (INFO) Associate Professor Amelia Gibson, along with researchers from the University of North Carolina and North Carolina State University, recently authored a study about screening and referral for SDoH in maternity care. We spoke with Gibson to learn more about SDoH and her findings.
What role do structural factors such as political and economic policies, power relations, and resource distribution play in shaping individual circumstances related to SDoH?
Social and structural conditions like social, political, and economic policies shape our communities (figuratively and literally) and lay the groundwork for the health and education outcomes that we see today. If we just look at unequal distribution of resources and the history of housing segregation in the United States, we can see how the segregationist policies that physically divided communities by race, income, and disability lay foundations for health and education disparities today. Federal housing administration insurance policies and racially restrictive covenants legally segregated neighborhoods and prevented Black Americans from building wealth through property ownership as a matter of federal policy until the 1960s. Many US neighborhoods are largely still segregated today. When people live in segregated neighborhoods, it becomes much easier to argue for uneven distribution of resources—each neighborhood pays for its own services. If a neighborhood has more resources to begin with, it can pay for better educational and medical facilities and afford to retain skilled staff. High-income communities can afford to build level IV birthing facilities and level I trauma centers nearby to care for extreme emergencies quickly. Meanwhile, lower income communities across the highway (federal policies recommending separating Black and white neighborhoods by highways) cannot support these kinds of expensive healthcare and educational facilities and staff. Residents of healthcare deserts like this are less likely to be able to access preventative care, dental, and mental healthcare. They are less likely to survive emergencies and serious illness, which also means that the mortality rates are higher in their neighborhoods—not necessarily because of more violence, but because of less access to healthcare. Fewer educational resources also means more difficulty building wealth. It becomes a cycle. And this ignores myriad other ways that structural racism and ableism shape healthcare. For example, environmental racism–the fact that U.S. communities have a history of destroying and polluting Black neighborhoods by zoning waste sites, major roads, factories, and highways in and near them–which contributes to higher rates of asthma, COPD, and other chronic illnesses among Black children and adults. Technological bias—the fact that some of the most basic healthcare tools (like oxygen monitors) typically provide erroneous readings on dark-skinned people—is often dismissed in care. And then because many clinicians are trained in a healthcare system that often frames these disparities as natural, or the simple result of genetic deficit, rather than outcomes of harmful social structures, we also see obstetric violence, dismissal of Black women’s pain, and outright interpersonal racism.
What are some potential solutions or approaches that can be taken to address disparities related to SDoH in maternity care, and improve outcomes for marginalized populations?
As a field, healthcare is just openly recognizing the impact of social determinants of health on health and wellness. Healthy People 2030 groups SDoH into five areas—economic stability, educational access and quality, healthcare access and quality, neighborhood and built environment, and social and community context. From what I’ve seen, granting agencies and large institutions are still very much focused on a medical charity model of SDoH, looking for ways to collect data about individual people and communities, figure out what is missing (or what needs to be fixed, socially) with each one, and providing each person what they need. And it is good, to an extent, to try to help meet people’s needs. But these approaches often demand that people trade personal data for access to resources, and share information that might negatively impact their care or put them at risk for family separation. I’m encouraged at what I see as a burgeoning evolution in the way we talk about SDoH. New federal health objectives have expanded too. We are seeing things like “Reduce the proportion of children with a parent or guardian who has served time in jail” and “Increase the proportion of adolescents who have an adult they can talk to about serious problems” as health objectives. This lays the groundwork for supporting more holistic research and community outreach efforts at the institutional level, and acknowledges the impact of quality of life on health.
Can you explain what SDoH-related programs in maternity care typically address, and how they aim to protect and promote the health of pregnant and birthing people?
The most established SDoH programs have been financial programs focused on women and children, such as Medicaid and the supplemental nutrition program for women, infants, and children (better known as WIC). Hospital and community health social workers often screen during pregnancy and during birth hospitalization for eligibility in these kinds of programs and make referrals. Others focus on helping coordinate care.
What are some of the challenges and potential harms associated with incorporating SDoH screening and referral into clinical care, and how do these impact patient outcomes?
I think the two biggest problems with current SDoH interventions is that they focus primarily on poverty and ignore the complexity of structural and interpersonal racism built into the provision of healthcare, and not enough thought is given to proper management of personal data in healthcare institutions, and they assume that poor people do not need or deserve autonomy over their personal data. In developing interventions and technology, clinicians and researchers should understand health disparities as outcomes—and be intentional about not replicating these disparities. One habit we are trying to break in our BELIEVE interprofessional education project is providers saying, “well the average blood pressure for Black women is higher, so this is normal—we aren’t going to treat this patient’s high blood pressure.” This is how women die. We have also seen these types of assumptions being built explicitly into medical algorithms that prioritized white patients for kidney transplants based on their previously having spent more money on care. In maternity care, we have seen these kinds of algorithms with explicit racial modifiers for calculating whether a pregnant person can have a vaginal birth after cesarean (VBAC). This, in my mind, is a social determinant of health.
Also, the ‘cutting edges’ of SDoH technology rely on unimpeded collection and sharing of vast amounts of personal data among agencies and healthcare institutions. Although patients technically have the right to limit sharing, in practice, rights are pretty much signed away in the end user license agreements we sign before receiving treatment (HIPAA acknowledgments, consent to treatment, and privacy policy), revoking permissions is onerous, and providers are not required to acquiesce to requests not to share data. Little thought is put into meaningful consideration and education about patient rights, and qualification for services usually requires disclosure and agreements to be surveilled. Patients typically receive very little explanation of how their data will be used, who will see it, how long it will be kept, or if it can be used to cause them harm. Also, many healthcare institutions screen patients for social and economic needs whether or not they have resources to offer.
How can health care providers and institutions effectively address the limitations of SDoH screening and referral programs, while also ensuring that patients receive meaningful solutions to the problems identified?
For referral programs specifically, I think there needs to be a more system-level rethinking of the way we approach privacy and data in clinical spaces. Legally, we no longer hold that walking into a hospital means giving up personal autonomy, but patients often describe violations of consent and disrespect for their values and boundaries. In order for practices to catch up, healthcare institutions need to consider their data practices (and other practices) from the patient perspective. Community-engaged and community-led design of services and systems would be a start. Sharing information about resources with all patients without screening, giving clear description of any eligibility requirements, and clear explanations of what type of personal information will be collected and how it would be shared would allow patients to explore options without fear of surveillance or negative repercussions.