By September 2015 database managers hope to have a network in place that will link databases containing the PHI records of millions of people. The project is being implemented by PCORI, Patient-Centered Outcomes Research Institute, a non-profit organization formed at the behest of Congress as part of the 2010 Affordable Care Act. PCORI’s mission is to organize “comparative effectiveness” research in the healthcare industry regarding different treatment possibilities, drugs and devices. PCORI elected to use its funding to create a network pooling millions of patient records in aid of its mission. Issues still undecided include what pharmaceutical and insurance companies’ access to the data will be. PCORI asserts that the data, which will, in some cases, include links to genetic samples, will be anonymized before release to researchers. Critics worry that patient identities may not remain private (see “De-identified PHI records relatively easy to re-identify Harvard prof demonstrates”).
See full Washington Post article at “Scientists embark on unprecedented effort to connect millions of patient medical records”.