The White House wants ideas for advancing “precision medicine” — a field of research aimed at customizing health care treatments using a patient’s genes, environment and lifestyle.
In a blog post Friday, U.S. Chief Data Scientist DJ Patil and Stephanie Devaney, project manager for the Precision Medicine Initiative, called for feedback from groups developing specific technologies or new methodologies that could lay the groundwork for precision medicine efforts.
“We need your creativity, on-the-ground experience, and enthusiasm to realize the promise of delivering individually tailored treatments to patients,” they wrote.
Several areas of focus involve technology. In one example, officials are searching for a mechanism that would “support the storage and analysis of large amounts of data, with strong security safeguards.”
Promoting precision medicine has been a recent priority for the administration. During his State of the Union Address in January, President Barack Obama launched the precision medicine research effort, requesting $215 million in the next fiscal year to support it. And precision medicine was already high on Patil’s docket when he became the White House’s first chief data scientist earlier this year.
Daniel Castro, director for the Center for Data Innovation, said while he was supportive of the administrative efforts to champion precision medicine, he’s “hopeful that the White House will look at how policy can impede useful data sharing and start to tackle this issue.”
“Unfortunately, commonsense efforts to modernize health IT infrastructure often run into political roadblocks,” he said in an email. For example, he called for lawmakers to adopt universal patient identifiers, which would allow hospitals and health care providers to link patients to their medical records.
He echoed the conclusions of a report released last month by the Center for Data Innovation and patient advocacy group HealthITNow, which recommended lawmakers establish stronger federal requirements that allow health data to be shared and compared.
In the blog post, Patil and Devaney lay out key areas ripe for innovation:
- New approaches for deploying precision medicine into patient care to improve health.
- Exciting new ways to engage patients, participants, and partners in research, and get the word out about Precision Medicine Imitative, including through the use of novel technologies.
- The deployment of innovative ways of including historically excluded and underserved populations in research.
- The development of robust APIs in electronic health record systems that can support patients accessing their clinical data and donating it for research.
- The creation of workable models of information sharing across organizational boundaries with appropriate privacy and security protections.
- Novel analytics to help combine diverse data sets with appropriate privacy and security protections to answer precision medicine questions.
- New solutions for security issues in building large research data sets.
- Steps to increase the number of high quality data scientists and technologists working in health care.
- The development of grand challenges, competitions, and prizes to foster innovation.
They ask the public to share their ideas here by Sept. 21.