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Health Data Equity Project Affects Entire Finger Lakes Region

2021 Annual Report: 15 Stories for 15 Years
“In a healthcare landscape that’s extremely dependent on data, it advantages everybody to make sure that information is as correct and inclusive as possible,” said Candice Osborne of the Rochester RHIO who is co-leading the organization’s new Health Data Equity Project. This takes on even greater prominence as the community commits to tackling disparities in care among traditionally underserved and underrepresented populations.
Health Data Equity Project
Started in Spring 2021, the Greater Rochester Health Foundation-funded initiative will improve the quality and completeness of demographic data collected and shared in electronic health record systems across the region. In doing so, with a focus on accurate race, ethnicity and gender data, inequities can be better spotted and addressed. 
Spanning two years, the project is developing best practice guidelines for data collection, normalization, and analysis through Rochester RHIO systems, further strengthening its position as the Greater Finger Lakes Region’s trusted health information exchange. Among several anticipated improvements, residents will be able to self-identify beyond one race or ethnicity category, as well as benefitting from a standard that better accommodates data for those who identity as non-binary or non-conforming.
The RHIO team has already begun analyzing its top 100 data sources by volume to establish a baseline for what race, ethnicity and gender data may be incomplete or incorrect. It is then moving on to review and establish standards—in collaboration with partners—for adoption and technical implementation.
“Having a complete and inclusive patient identity helps deliver better point of care treatment to individuals, while at the same time enhancing population health-related community initiatives, reporting, research and evaluation,” said Sara Abrams, the RHIO’s project co-lead. “For 15 years, Rochester RHIO has been widely known for our progressive efforts to improve collaboration in healthcare. The Health Data Equity Project illustrates how we’re committed to do the same moving ahead, keeping the region at the forefront of highly effective, patient-centered care.”