NIH puts data stitching at top of precision medicine to-do list

The National Institutes of Health (NIH) has put the establishment of a way to combine data from different sources at the top of its list of initial priorities for President Obama's precision medicine initiative. Such a system is essential if the NIH is to pull off its plan of making use of data generated by third parties.

The NIH has already identified some possible sources of data. Kaiser Permanente, the Mayo Clinic, the Marshfield Clinic in Wisconsin, Geisinger Health System and the U.S. Department of Veterans Affairs have all reportedly volunteered to contribute to the initiative, which aims to gather data on one million people. Before talks with these potential partners can advance, NIH wants to figure out how it will handle and combine their data.

Francis Collins

"That doesn't necessarily mean all of the data is in one place being operated by the same software," NIH Director Dr. Francis Collins told Reuters. Collins has established some early guideposts for the program, though. The software must be transparent and participants should retain control over how their data are used. "You want individual participants to have ... a dynamic opportunity to change the level at which they are willing to give access to possible research partners," Collins said.

The NIH has held a workshop to discuss the initiative and formed a panel to weigh up various proposals. Collins expects to have a clearer idea of how the program will progress by October, at which time NIH should also know whether it will receive its share of the $215 million set aside in Obama's 2016 budget for the precision medicine initiative.

- read Reuters' article