ASHINGTON — President Obama is set to hold a summit Thursday to discuss the next steps in his year-old Precision Medicine Initiative, laying the groundwork for long-term research that administration officials hope will continue after he leaves office.
The new measures include a pilot program investigating how to recruit participants, draft security provisions for the medical data that will be collected, and an expansion of the Department of Veterans Affairs’ Million Veteran Program to collect medical data from active-duty military personnel, administration officials said in a call with reporters Wednesday.
The new actions were announced in advance of the White House summit marking the beginning of the initiative’s second year. Obama is scheduled to participate in a discussion with government officials, researchers, and patient advocates, where he’ll talk about the next steps, as well as the progress he thinks the project has made so far.
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Obama’s involvement shows that he “cares a lot about this topic and this initiative,” said John Holdren, director of the White House Office of Science and Technology Policy. The broad participation in the summit, which will feature 170 people from government agencies, private research institutions, and patient groups, shows that “this is an all-hands-on-deck operation,” he said.
Obama announced the Precision Medicine Initiative last year to accelerate research into treatments tailored to individual patients. He’s asking Congress for $309 million for the initiative next year, an increase of more than $100 million over this year’s spending.
The initiative includes a National Institutes of Health project to gather data on the health habits of 1 million volunteers, a goal the NIH hopes to reach by the end of 2019. In addition, the National Cancer Institute is putting a new focus on studying the genomic factors that can lead to cancer.
Here are some of the announcements the summit has in store:
- The first award from the NIH will go to Vanderbilt University — with advisers from Verily, the rebranded version of Google Life Sciences — to determine the best ways to recruit volunteers. The NIH hopes to enroll 79,000 people by the end of this year.
- The administration will start developing open, standardized applications that people can use to contribute their medical data to research, including the precision medicine research group.
- A coordinating center will be created to manage the project and work with a network of health care providers that will collect volunteers’ medical data.
- A new guidance document will explain how volunteers can make their health data available for research without running into trouble under the Health Insurance Portability and Accountability Act, which is supposed to protect the privacy of health information.
- The administration will also announce new commitments from a variety of medical groups, medical centers, and private companies. The American Medical Association, for example, says it will help physicians use electronic tools to make medical information more easily available for the research volunteers.
- The VA’s Million Veteran Program, which already has enrolled more than 450,000 veterans, will be a focus of the summit. VA Secretary Robert McDonald is scheduled to talk about the program and its planned extension to also include active-duty military members.
Dr. Francis Collins, director of the NIH, said that while the Precision Medicine Initiative isn’t aimed at any specific disease, it could make it easier in the future to launch clinical trials that are more narrowly focused. With such a large group of motivated volunteers who are willing to share their health information, Collins said, “this could be a very efficient way, going forward, to mount clinical trials to answer specific questions.”