The federal government is pursuing a fistful of bold visions to transform healthcare including the Precision Medicine Initiative and the National Cancer Moonshot, and for those to succeed patients are going to need the ability to access and share health data in new ways, according to three federal officials.
“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,” wrote U.S. Chief Data Scientist DJ Patil, Senior Advisor Claudia Williams and Precision Medicine Initiative project manager Stephanie Devaney.
The authors cited President Barack Obama’s Precision Medicine Initiative, an innovative approach that takes into account individual differences in people’s genes, environments, and lifestyles in treatment and research, and the National Cancer Moonshot, which leverages Big Data to find solutions to genetic abnormalities, as examples of data sharing to accelerate research and translate findings into new treatments.
HHS has been taking steps to enable the data sharing that PMI, the Cancer Moonshot, and key research projects will demand.
The agency recently issued guidance to clarify patient rights to access a variety of health information, including personal health records, the information in their health records, clinical laboratory test results, and genetic data. And earlier this month, the Food and Drug Administration held a workshop with patients and providers to understand the best ways to return information that is usable, meaningful, and actionable.
“We’ve worked hand-in-hand with the private sector (to provide patient access to health records) and together, last week, the companies that provide 90 percent of electronic health records to hospitals nationwide pledged to improve the flow of data across healthcare settings, provide people with easy and secure access to their information, and adhere to federally recognized standards that assure that patients can access their own data,” the authors explained.
HHS is also encouraging the development of apps that use open, standardized application programming interfaces to help consumers aggregate their health information in one place that is under their control.
And at the recent Precision Medicine Initiative Summit hosted by President Obama at the White House, six of the major electronic health record vendors announced that they will pilot the use of standard APIs for individuals to access and contribute their data to research.
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The authors also pointed to the early traction Blue Button has gotten. Through the public-private effort some 150 million Americans can now access information from providers, medical laboratories, retail pharmacy chains, and state immunization registries. What’s more, three million veterans, service members, and Medicare beneficiaries have now accessed their personal health data more than 43 million times.
“These are exciting steps toward ensuring individuals have access to their data,” Patil, Williams and Devaney wrote. “But we’re far from done.”