HHS improves data sharing through discussions with stakeholders

Health agencies now have better access to the Department of Health and Human Services’ data following a year-long data initiative focused on information sharing.

The HHS partnered with the Center for Open Data Enterprise to hold a series of roundtable discussions aimed at improving the ways agencies within the department share, integrate, analyze and visualize federated data to better inform policymaking and support evidence-based decision-making.

The project began in 2018 when the HHS evaluated the current state of its data sharing.

“We went out and engaged our divisions to understand what data sets were most valuable, how people were sharing it, where we were finding barriers and where we could see opportunities,” said Sanjay Koyani, the executive director for innovation at HHS Office of the CTO, in the HIMSS20 Digital session Maximizing Value from Government Health Data: A Federal View.

From that evaluation, the department learned it was hard for agencies to figure out what data was available. There was a lack of transparency on how data was being used, and the cost of data was a barrier for some agencies to perform data analyses, Koyani said.

That’s where the HHS brought in CODE to help facilitate roundtable discussions with government officials, as well as health stakeholders.

“In all of this work, we had representatives from patient-advocacy groups and others at the table,” Joel Gurin, the president and founder of CODE, said during the panel. “It’s very much about looking at the data issues, not only from the point of view data scientists and health experts, but also from the point of view of patients and caregivers whose lives the work ultimately affects.”

Over the course of 2019, there were three discussions. One about sharing and utilizing health data for AI applications, one about balancing privacy with health-data access, and one about leveraging data on the social determinants of health.

“All of us involved in this saw a tremendous opportunity here because data sharing, AI and new kinds of data analytics – and the development of social determinants of health data are really providing new ways to improve diagnosis and treatment by using all kinds of health data,” Gurin said.

Gurin highlighted some of the key takeaways of each of the roundtables in the digital session.

Through the use of AI, agencies can reduce some of the costs associated with administrative tasks, patients can get connected to resources and physicians can get help with early detection.

The issue of privacy was a major topic when it came to data. If data sharing is done correctly, there can be a tremendous public good for everyone from patients to federal agencies, according to Gurin.

“There’s got to be a balance between the risk of a privacy breach and the benefits of using the data,” he said.

During the roundtable on the SDOH, participants were able to make connections between many of the conditions that are impacting Americans every day and social factors that play into them. For example, Gurin pointed to the connections that infant mortality and the obesity epidemic can have with nutrition and housing.

The topic of the SDOH is especially important during the COVID-19 pandemic, because of the greater awareness of the connections between social factors and health, he said.

“I think if anything, the focus on SDOH data has become more urgent in the months since we held this roundtable,” Gurin said.

As a result of the HHS initiative to improve its data sharing, it has created an open-source and scalable data-sharing platform that is designed to be more cost-effective and secure.

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