Data collection and data sharing across sectors are absolutely critical for meeting health-related needs and closing the health gaps in low-income and high-risk communities. But what exactly should be collected, and by whom? And how do we balance the benefits and risks?
Incorporating SDoH into the medical setting
On July 9, 2021, the Office of the National Coordinator for Health Information Technology (ONC) announced an update to the U.S. Core Data for Interoperability (USCDI), which provides a standardized list of data elements to be collected and shared by medical providers as part of a patient’s electronic health record (EHR).
New to that list is information regarding a patient’s gender identity, sexual orientation, and social determinants of health (SDoH), an acknowledgment that such information is crucial to providing the highest quality care for each patient. Dr. Rachel Levine, HHS assistant secretary for health, applauded the updated USCDI, calling it "an important step in reflecting the needs of all patients who access the nation's healthcare system."
The USCDI update was a response to feedback “from a wide variety of stakeholders,” said Micky Tripathi, Ph.D., national coordinator for health information technology. "We heard that this new version of the USCDI should reflect America's diversity and include data elements like sexual orientation, gender identity, and social determinants of health while helping to address disparities in health outcomes for minoritized, marginalized, and underrepresented individuals and communities.”
While medical providers are not required to collect this information from patients, they are strongly encouraged to do so. Moreover, the update provides IT teams with a path forward to including these data elements in EHR systems.
What about privacy concerns?
With access to more information, payers, providers, and community-based organizations (CBOs) are able to work in alignment. But in an age of digital privacy and security risks, how can we ensure that patient information remains safe, especially when that data is shared across sectors?
When working directly with at-risk populations, how do we achieve a model of ethical data collection, analysis, and sharing?
Many patients worry about digital and health privacy, but those in vulnerable communities may be particularly hesitant to share personal information. According to Deven McGraw of the National Council for Biotechnology Information, one out of six people withhold health information due to concerns about confidentiality, with individuals representing racial or ethnic minorities voicing even greater concern. “As many as two-thirds of adults suffering from a diagnosable mental health disorder do not seek treatment, in part because of fear of disclosure of sensitive health information,” McGraw adds.
As cross-sector data collection and sharing becomes more standardized, compliance with state and federal privacy laws must be at the center of that work. While payers and providers have strict guidelines for data collection and sharing in the medical setting, CBOs have different —and sometimes less standardized—guidelines. Additionally, healthcare and CBOs often operate very different software or EHR systems, which can make the integration of multiple data streams complicated. But technology and innovative cross-sector partnerships can prevent data from remaining siloed, while also keeping patient information protected. Platforms like Healthify’s offer a HIPPA-compliant bridge between healthcare and social services providers.
Sharing information across sectors is beneficial for all stakeholders involved in an individual’s care. The more you know about the individual’s needs, the more easily you can coordinate care and ensure those needs are successfully met.
Health information exchanges (HIE) are the future. They allow patient information to be shared between multiple healthcare providers serving the same community, often regardless of the type of EHR system. And community information exchanges (CIE) function as “ecosystems of health care and community partners that share information on the individuals they serve through a standardized data collection language.”
The need for SDoH data is now
Given the ramifications of the COVID-19 pandemic, the capacity for social services providers is low. But with record-high rates of unemployment, child food insecurity, and evictions, demand for SDoH interventions is only increasing.
The good news is that analyzing SDoH data is now possible and information is more widely available, granting health plans new opportunities to predict social risks. Predictive analytics combines layers of SDoH data, which helps payers and providers identify populations that are facing high social risks, like housing or food insecurity.
According to a recent study conducted by researchers from New York University’s School of Global Public Health and Tandon School of Engineering, “Machine learning can accurately predict cardiovascular disease and guide treatment—but models that incorporate social determinants of health better capture risk and outcomes for diverse groups.”
As the leading global cause of death, cardiovascular disease disproportionately affects those in low-income communities and communities of color. The NYU study found that those machine learning models that incorporated SDoH data as well as health data, were more accurate in predicting cardiovascular outcomes for a more diverse community of patients.
As the healthcare system and the community become more integrated, the collection and sharing of SDoH data are critical to understanding a patient’s health, lifestyle, and environment. Analyzed, this information provides a roadmap for addressing common barriers to care and helps to better address the needs of vulnerable community members. When SDoH information is collected and shared, with protective measures, payers, providers, and CBOs can work together to provide direct resources, such as bus vouchers, grocery vouchers, or temporary housing.
To improve patient and community health outcomes, we must collect and share data. Ultimately, this requires all of us—SDoH platforms, payers, providers, and CBOs—to work together to build secure systems that prioritize privacy and support the patient’s overall health and wellbeing.
Healthify is dedicated to building more privacy-safe ways to share data and improve care across the healthcare ecosystem. Learn about our platform and solutions here.