Precision Medicine Initiative Needs Help with Data Sharing Barriers

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The White House is looking for input from the healthcare industry to identify new information technology activities that can help make President Obama’s $215 million Precision Medicine Initiative a reality.

In particular, the Obama administration wants to move the high-profile initiative beyond the limited data sharing ability of electronic health record systems by allowing individuals to more easily donate their data to the kind of research that will lead to individualized, tailored treatments for patients.

Also See: Precision Medicine Requires Unlocking Data from EHRs, Other Sources

“Over the course of this administration, we’ve seen incredible advances in health technology, including widespread adoption of electronic health records. Yet, there is still more work to do. Too many people are unable to access, share, or move their health data easily,” writes Stephanie Devaney, the White House Office of Chief of Staff’s project manager for the Precision Medicine Initiative, in a recent blog.

Among technology areas the administration is interested in promoting is development of robust application programming interfaces in EHR systems that can support patients accessing their clinical data and donating it for research.

“We need people to actively engage in research and voluntarily choose to share their data with responsible researchers who are working to understand health and disease,” Devaney wrote. At the same time, she argues that precision medicine requires a “strong, secure, and nimble infrastructure for health data that protects privacy, ensures security and facilitates new research models.”

Towards that end, the White House envisions the creation of “workable models of information sharing across organizational boundaries with appropriate privacy and security protections,” as well as technology to support the storage and analysis of large amounts of data, with strong security safeguards. In addition, the administration wants to hear from industry about “novel analytics to help combine diverse data sets with appropriate privacy and security protections to answer precision medicine questions” and “new solutions for security issues in building large research data sets.”

Last month, the White House released draft guiding principles to protect privacy and build public trust as the Precision Medicine Initiative moves forward. At that time, the administration announced that the Office of the National Coordinator for Health IT and HHS Office for Civil Rights would jointly work to address barriers that prevent patients from accessing their health data.

In addition to these government activities, Devaney said the White House is “looking to a broad range of stakeholders to learn about new or expanded initiatives and programs” that are advancing precision medicine. The administration is asking industry to share new activities that support these goals by 5 p.m. ET on September 21.

Ideas can be submitted online at the White House Precision Medicine website.

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