As part of ONC’s efforts to embrace the concept of health equity by design, ONC’s Health Information Technology Advisory Committee (HITAC) held a hearing in March to explore equity considerations in health IT featuring expert panelists from the fields of health equity, health IT, and health data exchange.

Panelists drew from their experience working to advance health equity in distinct sectors, including practicing clinical medicine, developing technology for healthcare, and working to foster data sharing between healthcare and community-based organizations. Synthesized themes from the hearing include consistent, equitable data collection and interoperability challenges; the digital divide, including disparities in broadband access and digital literacy; and artificial intelligence considerations, including transparency and the importance of identifying bias and curtailing its impacts.

Data Collection

Accurate data collection is paramount to understanding health inequities, evaluating system effects on individuals and populations, and measuring change. Key data categories include race, ethnicity, sex, language, and disability status as well as information on social determinants of health (SDOH). Many panelists highlighted the need for standardized SDOH screening tools, as well as for the potential for more robust data exchange and research with uniform standards adoption. Numerous panelists discussed the need for the use of standards for sexual orientation and gender identity (SOGI) to allow for understanding and addressing disparities. Several panelists noted the importance of capturing an individual’s language preference – including both spoken and written language.  Andrew Hamilton, chief informatics officer of AllianceChicago, described the need for, “tools to be responsive to a growing need for diversity across age, race and ethnicity, gender, sexual orientation, primary language, and other socioeconomic variables.” Outlining UC San Diego Health’s multifaceted approach to boost collection of race, ethnicity, and language data from less than one-third to 94 percent of patients, Janet Campbell, vice president of research & development relations at Epic, encouraged collection and dissemination of best practices related to the implementation and capture of race, ethnicity and language data to foster broad use of successful concepts.

Data Interoperability

Panelists called for closed-loop referral processes enabling clinicians to place referrals to social service providers, track progress, and follow up on patient outcomes. Dr. Denise Hines of the Georgia Health Information Network and Dr. Dominic Mack, director of the National Center for Primary Care at Morehouse School of Medicine, described the need for data standards to facilitate information sharing between the EHR, community-based entities like pharmacies and food banks, and the statewide health information exchange, while preserving patient privacy. Dr. Angela Thomas, vice president of healthcare delivery research at MedStar Health, pointed to a similar need for “seamless communication” between the disparate organizations providing prenatal and delivery care to mothers and infants.

Digital Divide

Multiple panelists mentioned the need for vendor-agnostic interoperability, including with and between smaller providers and community-based organizations. Others noted the challenge facing organizations that lack access to interoperable technology, and the opportunity to promote and incentivize its adoption. Dr. Robert Murry, chief medical officer of NextGen Healthcare, recommended expanding access to interoperability tools to social service agencies, health departments, and other important health equity stakeholders. Speakers identified disparities in broadband access as a significant barrier, particularly for residents in urban and rural areas as well as underserved racial and ethnic populations. Additionally, panelists highlighted the importance of considering digital literacy when developing new policy, services, and technologies to ensure that individuals can use the services and devices intended for them, in order to bridge the digital divide and progress toward health equity.

Artificial Intelligence: Promoting Health Equity, Identifying and Counteracting Bias

Themes relating to artificial intelligence (AI) included the importance of transparent and diverse data, as well as diverse representation among those developing, testing, and evaluating AI, to help minimize and mitigate potential bias. As Dr. Nicol Turner Lee, director of the Brookings Institution’s Center for Technology Innovation, stated, “Computers do not discriminate. We do. We come with our values, norms, judgments, and assumptions about the world, and explicitly and implicitly they find themselves in our models.” Dr. Ziad Obermeyer of the University of California, Berkeley discussed the importance of defining bias, establishing goals of an algorithm, and assessing the algorithm’s performance based on these goals – to evaluate potential bias in an algorithm.

Speakers identified multiple potential sources of AI bias. Dr. Obermeyer explained how the use of proxy variables as predictors can lead to bias. For example, the use of a patient’s historical healthcare costs to predict future healthcare needs can be problematic, in that low costs may not signal good health, but rather, a lack of access to healthcare. IBM Chief Health Equity Officer Dr. Irene Dankwa-Mullan discussed the potential for bias to emerge through the research that generates evidence, from the provider perspective, or in the data itself.

Ongoing and Future Work at ONC and Beyond

ONC is grateful to each speaker who joined this important event to share their perspective and expertise.

And it’s worth noting that many of the themes we heard at the hearing relate to work already in progress at ONC.  For example:

• ONC’s Cures Act Final Rule implements interoperability requirements of the Cures Act, facilitating secure electronic access to information for patients and clinicians. In the Final Rule, ONC adopted the United States Core Data for Interoperability (USCDI) standard and established a process to update that standard. This includes an annual public comment process seeking input from the public about health IT standards needs. Based on stakeholder feedback, USCDI version 2 (USCDI v2) added standards for the exchange of SDOH and SOGI information building upon existing data classes within USCDI, which includes data elements relating to race and ethnicity.
• ONC is also working with the technology innovation community on the 360X project, which was formed to facilitate closed-loop information exchange and support patient care transitions.
• In addition, ONC seeks to advance interoperability through its Leading Edge Acceleration Projects (LEAP) in Health IT awards. A 2021 LEAP award providing funding for a University of Texas at Austin initiative to integrate closed loop social services referrals within the electronic health record.

Moving forward, ONC will continue to work with federal partners, industry, and other stakeholders to identify health IT solutions promoting health equity, in alignment with the Biden-Harris Administration’s aims to advance equity for all.

To learn more about ONC’s work to support Health Equity by Design, please review the previous blog post.

If you missed the Health Equity by Design hearing or want to listen to one or more sessions again, please visit the ONC HITAC site for more details.  You can also provide feedback about this topic in the “Other” category of the Health IT Feedback form under the Health Equity subcategory.