A Foundation for Ethical Use of Social Determinants of Health Data

Concern around the ethical use of social determinants of health (SDOH) is not new, but with this data becoming more readily available and calls for health equity getting louder, talk about the ethics surrounding this supplemental source of information has become more urgent.  

Access to SDOH in electronic health records (EHRs) and national databases of patient medical records is uncharted waters. The potential for bias and discrimination, as well as concerns about confidentiality, privacy, and security, have the industry proceeding with caution. 

The potential for better care management and more personalized care plans that take medical and social factors into consideration make SDOH invaluable. Data about food insecurity, unsteady housing or employment, and lack of transportation offer a look into a person’s life that physicians are rarely privy to, and this information must be treated with sensitivity. 

In response to concerns, the Executives for Health Innovation, also known as the eHealth Initiative (eHI), released Guiding Principles for Ethical Use of Social Determinants of Health in 2019 and followed up with Using Social Determinants of Health Data Ethically During COVID-19, which included real-world examples.

“Because of the sensitive nature of this consumer data, we felt it was critical to put a stake in the ground around the ethical use of this data,” says Jennifer Covich Bordenick, CEO of eHealth Initiative, said in a Health Data Management article. “Lots of industry groups are publishing papers and producing research, but there is not a lot of direction about how to use this data. eHI’s diverse coalition of healthcare leaders believes there is a way to do this that improves health, protects consumers, and promotes transparency.” 

We’ll get into the specific guidelines later, but first let’s talk about the definition of social determinants of health and why this data is so important.

What is SDOH Data?

Healthy People 2030 defines social determinants of health as “the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.” These non-medical factors that shape health in positive and negative ways include such variables as a person’s socioeconomic status, education, the neighborhood and physical environment in which they live, employment, and social support networks. Healthy People, an initiative from the U.S. Department of Health and Human Services (HHS), has established 355 science-based core objectives that are measurable and revised every 10 years. 

The five key areas of SDOH, identified by the HHS and the Centers for Disease Control and Prevention (CDC), are Healthcare Access and Quality, Education Access and Quality, Social and Community Context, Economic Stability, Neighborhood and Built Environment.

Efforts to improve population health have been traditionally focused on care, but the evidence is clear that a broader approach — one that addresses social, economic, and environmental factors — is needed.

When talking about modifiable contributors to health, medical care accounts for approximately 10-20 percent while the other 80 to 90 percent are attributable to SDOH. And socioeconomic status has been found to have a significant impact on a person’s health.

A study published in Science Daily compared the impact of low socioeconomic status with other major risk factors on health — including physical inactivity, smoking, diabetes, high blood pressure, obesity, and high alcohol intake. Using data from the United States, United Kingdom, France, Switzerland, Portugal, Italy, and Australia, the study determined that socioeconomic status is one of the strongest predictors of illness and death worldwide.

Guiding Principles

SDOH data and the insights they provide are crucial when identifying populations with barriers to care and facilitating interventions to address the obstacles that adversely affect a patient's or community's overall health and well-being.

The ethical framework created by eHI is intended to educate and guide the healthcare industry on the value of leveraging SDOH data for maximum good, while also keeping in mind and addressing SDOH privacy and security concerns. It is also meant to better inform how government agencies, healthcare, and other organizations structure their programs.

Guideline #1: Care Coordination Taking Into Account Privacy and Security

Identify individuals with SDOH needs, coordinate and deliver more holistic care, and facilitate connections to additional interventions or services consistent with privacy and security protections: With the right patient data, providers, community health workers, and other key stakeholders can create personal care plans that combine both medical and SDOH needs, ensuring patients have what they need to successfully follow their care plans. SDOH data should be collected, maintained, used, and disclosed in accordance with privacy and security protections.

Guideline #2: Recognizing Risk Through Bias-Free SDOH Analytics

Identify risk through the use of analytic tools to develop population health management interventions for individuals and communities. By leveraging their SDOH data, it is possible to predict if an individual is at an increased risk of a certain adverse health outcome, such as being readmitted to the hospital or not adhering to a medication regimen. This information can be used to coordinate the appropriate action. It is also important that choices made about modeling and analyzing data elements are free from bias. Standardization may be a means to help eliminate potential bias and discrimination.

Guideline #3: Confidentially Mapping Community Resources and Identifying Gaps 

Assess individual SDOH needs against available community resources to identify gaps that address health and wellness. SDOH data allows healthcare and community stakeholders to be able to map existing resources, local to the populations they serve. Data can be used to identify resource gaps so new programs and interventions can be developed to adequately address population-level care obstacles. Care should be taken to maintain confidentiality and privacy if any specific patient and health related data is mapped.

Guideline #4: Standardized Service and Impact Assessment

Assess impact of SDOH interventions and services. Stakeholders should measure and monitor SDOH interventions and their correlations to improve health outcomes, determining whether the interventions are positively impacting outcomes. There should be standard processes in place for tracking referral outcomes. These processes are needed to coordinate between social service organizations and healthcare stakeholders to evaluate and track results and make any necessary adjustment to the interventions.

Guideline #5: Customizing Health Services and Interventions

Use SDOH as a guide for quality discussions with individuals (or their designated guardians) and caregivers to jointly decide which services and interventions are the best fit. It is important to involve potentially impacted individuals in the discussion when SDOH is being used to improve their care. This includes educating individuals on how their SDOH will impact their health, reviewing interventions and services available to help, and jointly agreeing on next steps.

The guiding principles, which can be seen in full here, were developed as part of a SDOH collaborative that included leaders from American Health Information Management Association (AHIMA), the American Cancer Society, Google Cloud, and LexisNexis Health Care. An independent, non-profit organization, eHI published these guidelines with support from LexisNexus Risk Solutions, Health Gorilla’s partner and SDOH provider. 

“As an industry, we realize that improving the health of our communities and providing the right care plans depends on our ability to understand patients as people first — treating the person and addressing barriers to health, not just the disease,” said Josh Schoeller, Senior Vice President and General Manager, LexisNexis.

Health Gorilla and SDOH

Earlier this year, Health Gorilla announced a collaboration with LexisNexis Risk Solutions to integrate four clinically-validated SDOH scores and supporting descriptive attributes into our industry-leading Health Interoperability Platform, which supports a diverse set of use cases and enables the entire healthcare ecosystem to securely share actionable health data. The four scores are:

  • Medication adherence
  • Motivation
  • Total cost risk
  • 30-day readmission probability

Access to this new data expands Health Gorilla's ability to support healthcare and community organizations by reducing data collection burdens. Leveraging Health Gorilla's clinical and SDOH data simultaneously will give care teams the ability to create predictive models to measure the risk of a specific population, accurately evaluate the effectiveness of social services, and elevate how they monitor population health interventions. 

To learn more, visit our SDOH page or contact us anytime.

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