Federal health, data officials: Info sharing 'critical' to understanding disease

Efforts such as the Blue Button initiative and the Department of Health and Human Services' recent information sharing pledge represent progress for patients in an evolving healthcare landscape, according to a blog post by three federal policy staffers.

In the post, federal Chief Data Scientist DJ Patil, White House Office of Science and Technology Policy Senior Advisor Claudia Williams and National Institutes of Health Analyst and Precision Medicine Initiative Project Manager Stephanie Devaney say that the nation is still very much in the early stages of data-driven healthcare, and patient access to data a key component to moving the industry forward.

"Increasingly, individuals are able to access their own digital health data and share it as they want with their family, clinicians and researchers," Patil, Williams and Devaney write. "This capability is critical for the types of research that can advance our understanding of disease and health."

Last week, HHS announced that a multitude of electronic health record vendors and providers joined together to commit to improve consumer and provider access to EHR data. Companies that provide 90 percent of the EHRs used by American hospitals, as well as hospitals in 46 states--including the five largest private healthcare systems--all signed the pledge to improve the flow of health information.

And at last month's Precision Medicine Initiative summit, six EHR vendors--Epic, Cerner, Allscripts, athenahealth, McKesson and drchrono--announced that they will launch pilots that use open, standardized applications to help patients better access and share their health data.

"When patients are engaged in research and voluntarily sharing their health data with the research community, the opportunities for new discoveries at the intersection of human biology, behavior, genetics and data science are unlimited," Patil, Williams and Devaney write.

Currently, 59 percent of hospitals and health systems responding to a survey by Health Catalyst said they do not see precision medicine as a key goal in the next five years. However, 71 percent of academic medical centers said it will play a significant role for them in the coming years.

To learn more:
- read the full post

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