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Using EHR Data to Advance Chronic Disease Surveillance, Public Health

Regenstrief researchers are working with local public health partners to share EHR data for chronic disease surveillance through the state HIE.

EHR data could help public health officials conduct more precise chronic disease surveillance, according to Brian Dixon, PhD, MPA, interim director of the Regenstrief Institute's Clem McDonald Center for Biomedical Informatics.

Knowing which communities experience the highest burden of chronic disease is key for public health to distribute resources where they’re needed most. While the Centers for Disease Control and Prevention (CDC) conducts annual surveys in each state to estimate chronic disease burden, officials cannot break the survey data down to the local level.

To gather granular chronic disease insights, local health departments with scarce financial resources are often left to canvas their communities.

If healthcare providers shared chronic disease EHR data with public health officials, local health departments could align educational resources and work with providers to improve patient engagement in areas with the highest chronic disease burden.

"EHR data can help us identify populations and areas where we can then work together collaboratively between healthcare providers and public health to connect people to resources so that individuals with chronic illness can better manage their disease and live a better quality of life, even if they don't get cured for their disease," Dixon told EHRIntelligence in an interview.

"Before populations can benefit from some of those programs that are available in the community or available from public health, we have to identify them," he underscored.

Regenstrief is working on a project with the National Association for Chronic Disease Directors called The Multi-State EHR-Based Network for Disease Surveillance (MENDS) that leverages EHR data to generate estimates of chronic disease risk measures at national and local levels.

Health departments and other authorized users can access MENDS to monitor trends, inform policies, plan programs, and evaluate outcomes to improve population health.

"Patients come into healthcare facilities all the time for chronic disease-related visits that get documented in EHR, but those data typically are not shared with public health," said Dixon.

"I think EHR data will really allow jurisdictions to get down to those communities that are at most risk or highest risk and work with those communities to address these diseases," said Dixon, who also serves as director of public health informatics for Regenstrief Institute and Indiana University Richard M. Fairbanks School of Public Health.

He pointed out that the goal of MENDS is similar to what many health systems do with their Healthcare Effectiveness Data and Information Set measures around hypertensive patients.

HEDIS measures aim to help healthcare providers and payers understand their current performance in key areas to inform quality improvement initiatives.

"We're using that same approach, but at the community level and then sharing that data with our public health partners," he noted.

Dixon recognized that while EHR data holds promise for chronic disease surveillance, several barriers exist, he added as a caveat.

For one, public health must address the fact that hospitals and providers are not legally required to share chronic disease EHR data with public health.

"This is something that will have to be addressed at the national and state level," Dixon said. "We will either need reporting laws, some kind of agreement, or maybe it will just become the norm for providers to make these data available to public health."

He noted that MENDS has strong data use agreements and governance with healthcare providers through the Indiana health information exchange (IHIE). While other states and jurisdictions could use this model for chronic disease surveillance, HIEs do not exist everywhere, Dixon said.  

"We have to deal with the access to data issues," he said. "If we are going to rely on health information networks to do this, we need to make sure those are available in all communities."

In addition to a lack of data-sharing infrastructure, many communities do not have the workforce within their public health departments to do this level of chronic disease surveillance, Dixon said.

"If we want health departments to address the top 10 causes of death or the top 10 causes of hospitalizations in the country, then we're going to need more people with the right skill set to address this challenge," he emphasized.

Additionally, ongoing initiatives to improve the capture of race, ethnicity, and language data in the EHR are key for measuring chronic disease burden and moving the needle on health equity, Dixon said.  

"Public health really wants to look at marginalized or vulnerable populations and see that they're getting screened at the same rates as other populations," he explained. "Today, we can do some of that work, but often race, ethnicity, or insurance status is missing from the record, which doesn't help us slice and dice the population quite the way we want to."

Another challenge with using EHR data for chronic disease surveillance lies within ICD coding and standards, Dixon pointed out. Providers must use the most appropriate ICD codes and data standards, like the United States Core Data for Interoperability (USCDI) when documenting in the EHR so that public health officials can aggregate data.

"A lot of our work is in data cleaning and wrangling to make the data across the population fit together," Dixon noted. "Putting those pieces together to build our puzzle is not without some effort today. Our hope is that that becomes easier over time as providers embrace the standards and report their data using the available data standards."

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