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Embracing Health Equity by Design

Ryan Argentieri; Thomas A. Mason; Jordan Hefcart and Jawanna Henry | February 22, 2022

Gaps in health IT use illustrate the inequities that unfortunately exist in our health care system, which in turn can lead to inadequate patient care, experience, and outcomes. During ONC’s 2021 Tech Forum, Dr. Linda Rae Murray, the former chief medical officer at the Cook County Health & Hospital System, highlighted some of the health disparities she had seen firsthand while serving medically underserved patients in Chicago for more than 20 years.

When her organization launched a new electronic health record system almost 15 years ago, the registration form listed male and female as the only gender options. This omission, which was later corrected, did not allow clinicians to adequately capture information about their patients.

The same challenge exists when it comes to race and ethnicity. People of Asian descent, for example, have traditionally been grouped together when it comes to population-based data, which can impact the type of care they may need.

“There is not a blanket approach to improving health equity,” Murray said. “As health leaders, we must listen to our staff [who work] directly with patients and understand what our community needs. Every community has different challenges, but health equity can only improve if health care reflects those it serves.”

Every community has different challenges, but health equity can only improve if health care reflects those it serves.

A Multi-Faceted Approach to Equity

Health IT cannot address all of the societal and institutional factors that drive health inequities in the US today. However, it is vital that we mobilize health IT to identify and mitigate disparities where applicable, and even more important, that we not allow health IT to perpetuate or even magnify health equity gaps endemic to our system today. With this in mind, we at ONC are focusing on the concept of “health equity by design,” in which equity is a core design feature of our collective health IT endeavors. This means that policies, projects, and technologies, among many other efforts, are looked at early on through the lens of equitable health care access, treatment, and outcomes.  Does our work help address the root causes of disparities? How can we ensure existing standards can be leveraged to bridge divides or improve outcomes? What current regulations or certification criteria could help improve the safety, quality, and efficacy of health care for all people, nationwide? Looking ahead, how can health equity be “baked in” from the start as a fundamental process?

Getting the Right Data

As part of ONC’s 2015 Edition Final Rule and its 2015 Edition certification criteria, health IT developers seeking certification to the “patient demographics” certification criterion are required to demonstrate that a patient’s sexual orientation and gender identity (SOGI) can be recorded. Because these SOGI data were not included in the Common Clinical Data Set in 2015, health IT developers were not required to demonstrate the capability to include such data as part of summary care records. The potential to do so was updated in July with the release of the United States Core Data for Interoperability (USCDI) v2, which included these two data elements and four additional SDOH data elements. The four additional elements enable the identification of specific needs in areas such as food, housing, and transportation insecurity that will help coordinate care and assistance for at-risk patients. ONC is working alongside Gravity members from across the industry, federal partners like CMMI, and the HL7 community to rapidly mature standards for these data elements and incorporate them into workflows and plan design in the near future.

Using the Right Tools

EHRs are increasingly being used as the data sources for building and training algorithms, the development platforms for creating algorithms, and the user applications for incorporating algorithms in clinical decision-making. All algorithms have bias, and as use of such tools proliferates, it will be critical to ensure that users have awareness of what types of biases may exist to better inform applicability in their particular circumstances. ONC health IT certification already includes certain requirements for clinical decision support functions, such as identification of diagnostic and therapeutic reference information, and availability to the user of “source attributes” such as the developer of the intervention, where clinically indicated, bibliographic citations, and funding sources of the developer of the intervention. ONC is examining various approaches to ensure that users have the ability to know how to apply algorithms in the right way, at the right time, and in the right situations.

Interoperability can also play a large role in addressing health equity issues. A recent ONC award to UT Austin will help refine the use of standards to support safe, coordinated transitions of care and referrals among community-based organizations and health care providers. The project is closely aligned with the framework developed by the HL7 Gravity Project to identify coded data elements and associated value sets representing each patient’s social determinants of health in health IT systems. ONC will also leverage findings from past and current work done by the 360X project to enable providers to exchange data for patients transferred between facilities, particularly from hospitals to residential care facilities, regardless of the EHR system each organization is using.

Moving Forward

These are small, initial steps on a longer journey. Improving health equity requires all health care and public health professionals to commit to rowing in the same direction toward better health outcomes. All people deserve proper health care, regardless of race, gender, gender expression, disability, sexual orientation, economic status, or location.

Over the coming months and years, ONC will continue to focus on health equity in our policies and projects, in alignment with the priorities of the Biden-Harris administration.

We know we don’t have all the answers, but also know we must keep working to find them. If you have thoughts on how we should best define and operationalize health equity by design or have best practices we should showcase, please get in touch.  Share your thoughts in the “Other” category of the Health IT Feedback tool on our website. We look forward to continuing this discussion with our partners and finding solutions that leverage data, technology and interoperability to help all Americans receive the care they deserve.

Interest in Learning More?

Listen to the recorded sessions from ONC’s 2021 Tech Forum.

Read about USCDIv2 and the inclusion of SOGI and SDOH data elements.