Cancer Data Science Pulse

Social Determinants of Health—At the Crossroads of Biology and Sociology

The November 3 webinar has passed, but a recording is now available on the event page.

Deborah Guadalupe Duran, Ph.D., started work at NCI in 2001 as a senior policy analyst. She then served as deputy director of NCI’s Center to Reduce Cancer Disparities, where she was responsible for helping to plan and evaluate efforts aimed at reducing health disparities in people with cancer. Today, Dr. Duran serves as a senior advisor in the Office of the Director for the National Institute on Minority Health and Health Disparities (NIMHD). In that capacity, she advises NIMHD in developing, monitoring, and assessing NIH’s research agenda to address health disparities. On November 3, Dr. Duran will present the next Data Science Seminar, “Social Determinants of Health.” This blog offers insight into Dr. Duran’s work and why this topic is important to her.

You’ll be discussing “Social Determinants of Health” (SDOH) in the upcoming webinar. What are SDOH? Why are these data so important in cancer research and care?

The World Health Organization describes SDOH as “conditions in which people are born, grow, live, work, and age” (CSDH, 2008, p. 26), noting that those conditions can be shaped by the “distribution of money, power, and resources at global, national and local levels” (CSDH, 2008, p. 109). We know these are major drivers of health, both good and bad. For example, having access to preventive care, early diagnosis, and treatment by specialists—all can impact cancer outcomes.

Can you tell us what first interested you in this topic area? 

I wanted to better understand why our lifestyles and where we live have such a significant impact on our health. Seeing the inequities in my personal life first sparked my curiosity in this area. I knew from an early age that social influences impact health. I saw this firsthand in my daily life. I grew up poor, though I never felt poor, and I am a person of color. Racism was everywhere in my environment. From a young age, I was well aware that people are treated differently because of the color of their skin, the clothes they wear, their educational level, hair, etc. Those differences extended to health care. With little or no access to health and dental care, I witnessed the impact poor health had on the adults around me.

As I grew older and became a scientist, this was an area where I wanted to make a difference. I wanted to apply what I knew to be true from my personal experiences and find better ways to address these health disparities.

What obstacles have you encountered in working in this topic area? 

The lack of standardized data is perhaps the biggest obstacle. We don’t use standardized terminologies and data elements for collecting SDOH data, making interoperability among data sets very difficult. This problem arises in both research and clinical care. Different labs, clinics, and hospitals are classifying SDOH in different ways, if they are capturing these data at all. We need standards, including Fast Healthcare Interoperability Resources (FHIR) codes and ontologies, such as SemNet, that speak directly to SDOH.

Another major barrier is the inclusion of SDOH as a variable in studies that focus on diseases/disorders/conditions. Health is not pure biology, and it is not pure sociology. The two must be examined side-by-side to understand their relational impact on health.  

Finally, SDOH have not been researched well enough to know why or how different factors mediate or moderate health outcomes. For example, the stresses of racism and poverty are well documented, with studies showing that economic hardship, downward mobility, neighborhood poverty, and racial discrimination all contribute to allostatic load, or the wear and tear on the body, as well as to epigenetic aging (Brody 2016).

Perhaps all SDOH are related to stress. Adverse childhoods, even prenatal influences, may well increase risk for disease such as cancer in adulthood.

Were there any surprises that you’ve encountered in your work in this area?

Yes, I was surprised that in just over a year, a disease of mass destruction—COVID-19—could do so much to raise the world’s awareness of SDOH. This was something most of us working in the field have tried to do for more than 30 years. 

The emergence of COVID-19, and its overwhelming impact on people of color, set off a firestorm, leading many providers and researchers to finally begin incorporating SDOH into their missions. The Gravity Project was launched to develop, test, and validate standardized SDOH data. Those data will be used at the individual and population levels to help inform health management, health service resources, clinical research, and treatment outcomes. The Gravity Project includes stakeholders from every part of the health and human services ecosystems—clinical providers, community organizations, organizations involved in standards development, federal and state governments, payers, and biotechnology.

The Gravity Project hopes to create FHIR Implementation Guides and soon will be included in Electronic Health Records. This should go a long way toward standardizing the data we collect.

Who should attend the webinar? What can they expect to learn from this hour with you? 

Everyone! There will be something for most everyone—cancer researchers, data scientists, even clinicians. I’ll be discussing the impact and importance of SDOH on an individual’s health. I’ll give specific information on SDOH-related data challenges and resources available, including tips on how to adopt SDOH into your data collection and analysis, as well as into routine health practice. My hope is that people will leave the webinar with a better understanding of SDOH and the socio-cultural changes that need to take place in health care and research to address minority health and health disparities.   

Where do you see this topic headed in the next 5–10 years? What is your hope for this area of research?

I hope that research findings will give us a better understanding of which SDOH should be assessed to optimize health in our most vulnerable populations. If we could establish thresholds, we could use those metrics to improve an individual’s health trajectory. By making SDOH a routine part of research and care, we can form a more complete health “collective” that includes data from research, health care records, as well as information on geography, epidemiology, etc. Having such a complete representation of data would allow us to mitigate some of the health disparities we see today and be part of the decision trees for determining prevention and treatment approaches in the future.

Where can people go for more information? 

There are numerous resources, some of which will be provided in the presentation. Perhaps the more important question is, “How can my research include SDOH in data collection and analyses?” The NIH-funded PhenX Toolkit offers protocols for collecting SDOH. The Agency for Healthcare Research and Quality has data sets and analytic tools that are ready to use. The Gravity Project also offers resources and examples of use cases.

 

References

Commission on Social Determinants of Health (CSDH). Closing the gap in a generation: health equity through action on the social determinants of health. Final Report of the Commission on Social Determinants of Health. Geneva, World Health Organization, 2008.

Brody G.H., Yu T., Beach S.R. Resilience to adversity and the early origins of diseaseDev Psychopathol 28(4pt2):1347–1365, 2016. doi:10.1017/S0954579416000894

Deborah Guadalupe Duran, Ph.D.
Senior Advisor, Data Science, Analytics, and Systems, National Institute on Minority and Health Disparities
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