Active on Health Privacy

Written by Michelle De Mooy

CDT has long been active on issues in health privacy and the past few months have been especially busy. Here’s a quick snapshot of the various projects and outreach we are working on – ranging from wearables to your online porn viewing habits.

  1. This year, CDT embarked on a groundbreaking partnership with wearable company Fitbit to produce guidance on how to do privacy-protective internal research at wearable companies that benefits customers and society at-large. Funded by a grant from the Robert Wood Johnson Foundation, the project, Towards Privacy-Aware Research in Wearable Health, is underway, with a final report due to be released in June.
  2. CDT launched its first-ever Health Privacy Working Group (HPWG) this year and it’s off to a great start. The HPWG has convened twice now and both meetings included a broad cross-section of industry, advocates, government, and academics. Our first project will be drafting guidance on personal monitoring technologies (like wearables) for industry and policymakers, and should be completed and released by early summer. We will also issue guidance on the EEOC’s Notice of Proposed Rulemaking on corporate wellness programs and their compliance with the Americans with Disabilities Act. Definitely reach out to me if you’d like to join the working group.
  3. CDT wrote three papers over the course of last year in partnership with California Health Community Foundation. The papers focus on health big data in the government, clinical and commercial contexts. We presented our findings in a well-attended webinar hosted by the Health Data Consortium.
  4. I testified at National Committee on Health & Statistics on May 6 regarding Section 1179 of HIPAA, which exempts banks and financial institutions involved in payment and processing health-related items.
  5. I will sit on a “bootcamp” discussion at Health Datapoolza on June 2. If you’re planning to attend, I hope to see you there.

CDT has also been talking to the press and providing insight on a myriad of health privacy issues. Here are some of our favorites:

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