Health IT Now and seven other organizations call for common data standards for Precision Medicine Initiative (PMI) research and for the National Institutes of Health to "define an enterprise-wide approach to data sharing" within the PMI as part of the recently introduced Advancing Precision Medicine Act of 2016, in a recent letter to Senate health committee Chair Lamar Alexander (R-Tenn.) and committee ranking member Patty Murray (D-Wash.).
In addition, the signatories call for use of a common volunteer consent form that will be "uniform ... regardless of geographic location," and for patients to have the ability to withdraw consent to use their information.
For standardization in particular, the signees say they would like to see a single standard for each element of a data set; for example, the use of LOINC for lab-developed tests, or RxNorm for medications. Letter (.pdf)