CDT Comments On Use of Health Information in Federally Funded Research

CDT supports the intent of the ANPRM to update key federal privacy regulations to respond to a changed health information environment.  The success of a number of the emerging structures and programs associated with the ACA reforms will depend upon increased access to clinical information for secondary purposes, in addition to coordination of care across settings and across time, increased exchange of information with patients and caregivers, and computation of standardized measures of clinical quality – often for use in high-stakes payment and recognition programs.

We recognize, though, that this emerging electronic exchange environment may create new challenges for balancing reliable access to clinical data with protection of patient privacy and respect for individual patient preferences regarding data use, which suggests the need for substantial re-thinking of the historic approaches we have taken to encouraging and also regulating secondary uses of health care information.


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