HIPAA Challenges

This group started as a discussion about how difficult it is to support researchers working with HIPAA data and the particular challenges that come with it. Through these discussions, the group realized there was a substantial story to tell about how HIPAA impacts research negatively and what could be done to mitigate it. We’re now working to turn the content into some kind of publication like a white paper, share it with the community to get input and endorsement, then present it to policy makers.

Current Activities

  • Turning discussion content into a white paper
  • Gathering support for the work through conferences and publications

Previous Activities

Regulated Research Community of Practice presentation

How to Get Involved

Email hipaa-challenges-coordinators@carcc.org to be added to the Google Group and start participating. Possible ways to contribute:

  • Participate in biweekly meetings
  • Work on writing the paper
  • Develop policy maker contacts
  • Gather support from the community
  • Submit to conferences