Precision Medicine Requires Unlocking Data from EHRs, Other Sources

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Health information technology is “foundational” to President Obama’s $215 million Precision Medicine Initiative aimed at treating the specific needs and characteristics of individual patients, according to Karen DeSalvo, M.D., national coordinator for HIT.

“As a result of the HITECH Act and the hard work of providers, we are bringing healthcare into the digital age and we have reached a tipping point,” DeSalvo testified Tuesday before the Senate Health, Education, Labor, and Pensions Committee. “This strong foundation of health information technology makes it possible to bring to the bedside personalized treatment through precision medicine.”

According to DeSalvo, the data in electronic health records “married with advanced analytics, information from mobile health devices and other sources of data—including patient preferences—will provide the fulsome picture of a person’s health and needs.” She added that “this comprehensive data picture is necessary to identify the right prevention and treatment that is not only the most effective, but also most desired by the patient.”

Also See: EHRs to Play Central Role in Precision Medicine Initiative

Likewise, Francis Collins, M.D., director of the National Institutes of Health, credited the “widespread adoption of EHRs, the recent revolution in mobile health technologies, and the emergence of computational tools for analyzing large biomedical data sets” for making possible the Precision Medicine Initiative. According to Collins, as a longer-term goal of the initiative a national research cohort of one million or more volunteers “with appropriate privacy protections” will “share genomic data, lifestyle information and biological samples—all linked to their electronic health records.”

However, Senator Lamar Alexander (R-Tenn.), chairman of the Senate committee, argued that the $28 billion spent by the federal government to date on EHRs as part of the Meaningful Use program has failed to live up to its promise and may stand in the way of the Precision Medicine Initiative until EHR systems are interoperable.

“We’ve got to get these records to a place where the systems can talk to one another—that’s called interoperability—and also where more doctors, particularly the smaller physicians’ offices, want to adopt these systems, can afford the cost, and can be confident that their investment will be of value,” warned Alexander, who said EHR systems “hold great promise” but are not working the way they are supposed to.   

DeSalvo conceded that “we need to go beyond the pockets of data exchange and achieve true interoperability” as laid out in the Office of the National Coordinator for HIT’s nationwide roadmap. Under the President’s $215 million Precision Medicine Initiative, $5 million is earmarked for ONC to lay the groundwork to achieve many of the milestones included in its Interoperability Roadmap. DeSalvo told the Senate committee that ONC will engage industry stakeholders to identify the standards, technology, and policy necessary to support big data analyses and precision medicine with appropriate privacy protections.  

“We will need to establish standards for the most fundamental clinical information that are shared by all,” she said. “We will also need to establish standards for new data necessary for precision medicine including genomics, but also environmental exposures and patient-generated information.”

Collins added that precision medicine takes into account individual differences in patients’ genes, environments, and lifestyles. This new health data, he said, will be used to expand current cancer genomics research and to initiate new studies on how a tumor’s DNA can inform prognosis and treatment choices for patients.

“This is the world of big data in the best way,” concluded Collins. “We would want to have technology developers of all sorts who can figure out ways not only to look at your DNA sequence but all those metabolites that are floating around in your system.”    

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