In what promises to be a massive big data initiative, the White House yesterday announced a series of government actions and private-sector commitments to better tailor medical care to individual patients.
Through what President Obama is calling the Precision Medicine Initiative, the administration is tasking the National Institutes of Health with awarding grants to develop a vast database of volunteer patients that researchers could use to evaluate unique factors such as genetics, health history and lifestyle and develop novel treatment approaches.
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“This is an extraordinarily exciting time for medicine and the biological sciences, and a lot of this traces back to the work that was done in mapping out the human genome, which was an enormous endeavor,” Obama said in remarks during a panel discussion at the White House.
“And at the time, it was enormously expensive for us to do that,” he said. “With the advance of computers, big data, we are now seeing a rapid acceleration in making that process cheaper. It is spurring on a whole new set of understandings about how diseases operate and how the human body — how cells operate, how areas like cancer show that each cancer may be unique, even if it’s in the same organ.”
The Precision Medicine Initiative
The Precision Medicine Initiative, first announced a year ago, aims to continue that big data work to gain insights into how diseases develop and to identify new and highly customized forms of treatment.
“[W]hat we’re now seeing is the possibility of us identifying diseases, targeting them, individualizing treatments for a particular patient, and operating with the kind of precision that promises to reduce costs, provide much better care, make our entire healthcare system much more effective,” Obama said.
“And the key to all this is for us to be able to build up databases,” he added. “And because all of us potentially could have electronic medical records that voluntarily — with strong privacy protections — we pool together so that researchers, practitioners, scientists can share, we may be able to accelerate the process of discovering cures in ways that we’ve never seen before.”
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As part of the initiative, NIH is awarding Vanderbilt University and Verily (previously known as Google Life Sciences) to begin the work of amassing a cohort of at least 1 million volunteers “who will partner with researchers, share data and engage in research to transform our understanding of health and disease through precision medicine,” according to a White House fact sheet.
Also, the White House put out a request for comments on a draft of proposed security principles that would accompany the Precision Medicine Initiative, and the Office of the National Coordinator for Health IT (ONC) is to begin working with the Commerce Department to develop a security framework tailored to the effort. NIH and the ONC are also working with six electronic health record providers to develop open standards to make the information donated by patients accessible in a common format.
Private sector committed to help government improve healthcare
In addition to the government moves, the White House announced more than 40 commitments from private-sector groups that broadly aim to help patients understand their health information and share it for research purposes, enhance privacy and security, and develop tools to open data sets to encourage access and innovation. Those commitments include a host of promises from various healthcare players to expand access to certain sets of data, improve the interoperability of health IT systems, and expand education and training in data science and other areas where expertise is key to achieving the promise of precision medicine.
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And the administration sees tremendous potential in the effort, a point David Edelman, special assistant to the president for economic and technology policy, underscored Thursday afternoon at an event at the New America Foundation, a Washington think tank.
“Precision medicine is a classic example of an area where advances in technology, and advance in appropriate use of data and data science, can dramatically accelerate — in this case — innovations that save lives,” Edelman said.