Considerations for Collecting Social Determinants of Health in Healthcare

Considerations for Collecting Social Determinants of Health in Healthcare
By Anonymous | March 9, 2022

I previously worked in a group that built healthcare technology solutions and ran studies to understand their efficacy. One of the studies that I worked on involved capturing Social Determinants of Health (SDOH). In this blog post I will give a brief overview of SDOH within healthcare systems and then think through some of questions and considerations for collecting SDOH at the point of care.

Background


Figure 1: Overview of Social Determinants of Health
Image source: https://www.kff.org/racial-equity-and-health-policy/issue-brief/beyond-health-care-the-role-of-social-determinants-in-promoting-health-and-health-equity/

SDOH are factors in peoples lives that impact health outcomes and quality of life. These factors include economic stability, physical environment, access to resources, community context, and access to healthcare.(1) There have been many studies that show that SDOH have an impact on health outcomes. (2) Motivated by the need to increase health equity, many healthcare systems are starting to collect SDOH. (3)

Increasingly Electronic Health Records (EHR) are including fields for collecting SDOH data, which means that SDOH data, that have been entered into the EHR, become a part of the patient health record. (4) Healthcare systems are storing, viewing, and in some cases are analyzing patient SDOH data. This also means that patient SDOH can be viewed and analyzed in combindation with patient medical data.

Some healthcare systems have started collecting SDOH data without a clear plan for how to use them. There have been targeted healthcare programs to help address SDOH, such as Kaiser Permanente’s Healthy Eating Active Living Zones Initiative in California, which have had positive results. (5) But overall there are “inadequate healthcare-based solutions for the core problems such as access to care, poverty and food insecurity”. (4) In addition, even though most clinicians recognize the need for treating patients as a whole, SDOH are not their main area of expertise. (6)

Considerations
Here are some considerations for the lifecycle of collecting, storing and analyzing SDOH data within healthcare:

Informed Consent: There are no clear plans in place for how SDOH data will be used, which creates challenges in gathering informed consent given the lack of clarity around what will happen with the data.

Data Completeness: Some communities, especially those at higher risk, are more likely to be hesitant to share SDOH with their clinicians. (7) This creates challenges of self selection bias for the data that are collected. It also creates challenges with the analysis and eventual interventions since the data that are collected are likely to be an incomplete view.

Codification: According to the Healthcare Information and Management Systems Society, some SDOH factors have been codified by the International Classification of Diseases (ICD) but others are still not available. (4) In addition there is no standardized method or survey for collecting SDOH from patients. Not only does this put more emphasis on the SDOH that have been codified but it also makes it difficult to understand and share results.

Storage and Privacy: The Health Insurance Portability and Accountability Act (HIPAA) outlines 18 identifiers that are categorized as Protected Health Information (PHI). (8) HIPAA regulates that PHI data have heightened data security and privacy standards associated with them.


Figure 2: Overview of the 18 identifiers of Protected Health Information
Image source: https://www.iri.com/solutions/data-masking/hipaa/

All healthcare data have increased data security and privacy standards but PHI is the highest level. One challenge of collecting SDOH data is that they are highly sensitive data but do not currently fall within the PHI identifier list so they do not have the same level of security and privacy regulations associated with them. Not only the lack of clarity for regulation but also the ability for someone to have access to a broad dataset about an individual raises concern about the potential for harm if these data were to be leaked.
Actionability: Clinicians will be asked to collect and consider patient’s SDOH as part of the care process but most clinicians have not been trained in how to incorporate SDOH into the treatment plan. (9) This raises questions about the standards of care. It also raises questions about why the data should be collected without a clear plan for use.
Sharing: One of the goals for collecting SDOH data is to improve health outcomes. Some of the potential solutions for improving SDOH are to implement policies and add more resources to communities of need. In order to influence and help implement these solutions, either patient data or the analysis of patient data would need to be shared. This raises some concerns about whether the patients know that their data would be used and shared in this way.

Conclusion
SDOH contribute to approximately 80% of patient conditions and mortality. (14) It’s imperative to address SDOH needs, disparities in healthcare, and work towards more equitable care. It’s equally important to make sure that we are not introducing new challenges, with data and privacy, that could potentially negatively impact patients.

References
https://www.cdc.gov/socialdeterminants/cdcprograms/index.htm

Social Determinants of Health 101 for Health Care: Five Plus Five


https://health.gov/healthypeople/objectives-and-data/social-determinants-health
https://www.ncbi.nlm.nih.gov/books/NBK222128/
https://www.himss.org/resources/overcoming-obstacles-social-determinants-health
https://www.ncsl.org/portals/1/documents/health/HealthDisparities1213.pdf
https://www.fortherecordmag.com/archives/JF20p28.shtml
https://www.healthify.us/healthify-insights/benefits-and-challenges-of-sharing-sdoh-data

Beyond Health Care: The Role of Social Determinants in Promoting Health and Health Equity