Proposed social data collection standard

Health equity is a top priority for federal regulators, payers and the healthcare provider community. Yet due to insufficient demographic data and a lack of standardized information about the social determinants of health (SDOH), these stakeholders often struggle to identify where disparities exist, let alone how to solve for them.

To gain meaningful insights into how to best allocate resources and connect with communities, healthcare entities must improve their ability to collect granular demographic and socioeconomic data, said AHIP in a recent letter to HHS Secretary Xavier Becerra and OMB Director Shalanda Young.

“Robust, accurate, actionable, and standardized demographic patient data is fundamental to advancing health equity,” wrote Matthew Eyles, President and CEO of AHIP. “Collecting consistent demographic data allows health care entities to better understand the populations they serve and informs more culturally and linguistically appropriate patient-centered care.

“It also allows health care entities to better identify disparities in care and outcomes as well as understand the social drivers of health to better promote equitable care, devise innovative solutions, operationalize telehealth, and measure the effectiveness of interventions for continuous improvement.”

While the payer association applauds regulators’ attention to the issue and the current initiatives in play to tackle health equity concerns, there is still more work to be done to implement standards for demographic data collection, Eyles advised.

“Aligning these efforts at the ecosystem level across public and private health care stakeholders around demographic data content and exchange standards would facilitate electronic data capture, sharing, aggregation, and analysis,” he stated.

“Collecting the information once and sharing it seamlessly across trusted entities would lead to a more efficient, effective, collaborative, and patient-centered system. It would also permit a broader understanding of populations and geographic differences with larger sample sizes, as well as the creation of national benchmarks.”

Expanding demographic data collection

To further development of shared data standards, AHIP is offering its recommendations for standardized demographic questions covering traditional areas, such as race and ethnicity, as well as an expanded set of features such as disability status, military service history, and spiritual belief system.

The suggestions stem from a year-and-a-half long project to collect perspectives from payers, providers, patients, community-based organizations, and other groups, and are designed to mesh well with existing efforts to enhance digital interoperability of such data assets.

“Enabling the electronic exchange of demographic data through standardized content is pivotal to successful equity efforts,” Eyles stressed. “Having interoperable patient demographic data would allow the health care ecosystem to collect this data when most appropriate and convenient for the patient and share the information with other partners with patient consent to inform patient care and population health management efforts as well as to more effectively address disparities in access to care and outcomes.”

Some of the suggested questions build on familiar basics, such as providing more options for racial and ethnic identification, even down to country of origin or Native American tribal affiliation.

Meanwhile, the section about language includes separate questions about the patient’s preferred languages for reading and writing in everyday life as well as reading healthcare materials in particular and speaking with healthcare providers.

This level of detail can help to ensure that patients are able to communicate freely with their providers and fully absorb information related to their own health and self-care.

Interoperable data to empower healthcare

AHIP hopes to see their suggestions integrated into the nation’s larger efforts to tackle health equity concerns and improve the flow of meaningful demographic and SDOH data across the care continuum.

“An aligned and standardized approach to interoperable demographic data will empower the health care ecosystem to collaborate on shared health equity goals, measure progress towards those goals, and better serve individuals and communities,” Eyles concluded.

“With consistent and interoperable data standards, great strides can be made in reducing inequities and addressing social drivers of health while improving outcomes and minimizing the data burden placed on individuals and on the larger health care ecosystem.”

Jennifer Bresnick is a journalist and freelance content creator with a decade of experience in the health IT industry. Her work has focused on leveraging innovative technology tools to create value, improve health equity, and achieve the promises of the learning health system.