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Wide acceptance of data standards creating opening for improved health equity

The Office of the National Coordinator for Health IT in HHS is providing seed funding for prototypes and pilots for hospitals and other healthcare providers to ...

The Office of the National Coordinator for Health IT is investing heavily into health equity data.

In August, ONC awarded two grants totaling $2 million under the Leading Edge Acceleration Projects (LEAP) in Health Information Technology grant program. For the fifth consecutive year, awardees through the LEAP in Health IT program are seeking to create methods and tools to improve care delivery, advance research capabilities and address emerging challenges that inhibit the advancement of interoperable health IT.

One of those awardees was Boston Children’s Hospital, whose project, CumulusQ, is an open-source platform for improving Fast Healthcare Interoperability Resources (FHIR) data quality across the ecosystem.

The idea behind the program is to improve data management and data use to drive better and more accurate healthcare and health equity decisions.

Steven Posnack, the deputy national coordinator for health IT in ONC in the Department of Health and Human Services, said the LEAP program is key to provide seed funding, early testing and prototyping of different use cases to drive digital health data sharing.

With nearly every hospital across the United States now using electronic health records and with more than 80% of ambulatory providers also using electronic health records, the amount of digital healthcare data available is ever increasing, making the opportunities to use that data even greater.

“We look at the convergence opportunities now that involve individuals seeking care, it’s not just care that they’re getting in an acute care setting, going to the doctor or going to the hospital; they’re also getting care in their community and engaging in services that are out there. So as we look at the data that’s available both on the clinical side, but also in the community side or on the human services side, there’s a lot of opportunity to create new ways to improve care models,” Posnack said during the discussion Government Modernization Unleashed: The power of data. “Earlier this year ONC released a social determinants of health information exchange toolkit, which has some practical, on-the-ground resources for stakeholders in the health IT community, and gives them implementation guidance, among other factors to keep in mind. This is part of a larger umbrella of set of approaches in which the LEAP program fits from an HHS perspective.”


Boston Children’s Hospital’s project, CumulusQ, is a good example of taking advantage of the available data, the expanding use of standards and the better understanding of how to meet patients’ and healthcare professionals’ needs.

Dr. Kenneth Mandl, the director of the Computational Health Informatics Program at Boston Children’s Hospital, said the data being exposed today in a standardized format is opening the door for a set of tools that healthcare providers can deploy across the health system to monitor the quality of this data source, bulk FHIR as well as the SMART on FHIR interface and other and other successor interfaces that come along as well.

“Today, to get data out of electronic health records and map it into a usable format, where it can be shared and combined with data, let’s say from other sites of care — that could be for quality metrics, for example, or it could be for biosurveillance or could be for research — requires teams of individuals. I can tell you having been involved in many of these projects that the mapping portion of that went on when you have to map it into a common format is not a widely available skill set,” Mandl said. “What that means is that in federally funded other networks and projects where data are needed, only the most advanced medical centers can participate. So from an equity perspective — and think about this from the perspective of artificial intelligence and the algorithms that need to be designed and need to be fair — we need data from the health system out to the edges. Having a regulated interface that enables a federally qualified health center to participate just as easily as the Mayo Clinic will improve the diversity of the data that trains the algorithms and they will be more fair.”

Boston Children’s Hospital now has won three LEAP IT program awards over the last five years.

Dan Gottlieb, technical architect in the computational health informatics program at Boston Children’s Hospital, said by having certified interfaces in electronic health records, the data quality will only improve over time, which means small healthcare offices and hospitals will enjoy the benefits of better decision making sooner.

“It’s really been a huge amount of work by the entire industry. I work with a lot of leadership from ONC to really take these concepts, which are done in different taxonomies and different ways that healthcare sites now can create a common format for them. That goes down to the level of terminology and systems that say we’re all going to refer to this using the same nomenclature for this particular clinical term,” he said. “What ONC has done through the U.S. core data set for interoperability, which is a standard that they’ve been maintaining and advancing with community input, enables this data to be the output in a way that actually is really useful for use cases like research data exchange, clinical quality assessment and things like that.”

Promoting health equity

The healthcare data in and of itself is only as important as the understanding of the people behind the information.

Mandl said healthcare providers must also understand the demographics of the patients that doctors and nurses are treating.

“The requirement that the data elements be supported is somewhat separate from the requirements of the data elements be collected, correctly mapped and then be made available in a standardized high-quality format. As step one, we need to understand the availability of those data elements across the healthcare ecosystem. There’s no process to do that now. We want to design a process that not only works for this award, but they can generate tools that can be used widely to help with this effort,” he said. “If, in addition to measuring the quality and availability of these data, we actually put a demand signal and have federal programs that require that those data elements be reported for payment or participation, not the programs, now we’ve got a nice ecosystem and a potentially virtuous cycle whereby the health systems are motivated to collect and make these data available. We can tell them if they’re doing a good job or how to fix it where they’re not. We can have a widely available ecosystem set of tools.”

Currently, the healthcare system struggles to ensure it’s collecting the right data to promote health equity and help monitor specific issues.

Posnack added health equity continues to be an important priority of the Biden administration, and projects like those run by Boston Children’s Hospital and other efforts can lead to policy changes as well as accelerate change in the field.

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