Health Privacy

About health privacy, World Privacy Forum key health privacy resources

The World Privacy Forum is extremely active in health privacy, with a long and successful track record of work in this area. We have done groundbreaking work in the area of medical identity theft, as well as substantive analysis and education on critical privacy aspects of health data such as medical research, genomics, and many other issues. 

Some of our most frequently accessed health privacy resources include:

* A Patient’s Guide to HIPAA

* Medical Identity Theft Page (resources, reports, more)

* Health privacy tagged materials 

* HIPAA tagged materials 

* Electronic Health Records tagged materials 

* Common Rule and Human Subject Research Protection tagged materials

* Genetic privacy tagged materials 

We have many more publications and resources. For a full list of topics and publications, see our key issues page.

See below for health privacy news and content by date.

WPF comments to NIST regarding its differential privacy guidance

WPF submitted comments to the National Institute of Standards and Technology regarding its Draft Guidelines for Evaluating Differential Privacy Guarantees. The comments approach the NIST Draft Guidance from a policy perspective, and urged changes to some parts of the definitional language in the Draft Guidance. Key areas of the comments include: A discussion of the

WPF advises FTC regarding health data breach notification rule

The World Privacy Forum filed comments regarding the US Federal Trade Commission’s 2023 Notice of Proposed Rulemaking regarding Health Breach Notification. This marks the second set of comments WPF has filed, our first being in 2009 regarding the first iteration of the Health Breach Rule. The comments are technical, and focus on the fundamental challenges

WPF advises HHS regarding proposed changes to standards for privacy under HIPAA

WPF provided detailed comments to the US Department of Health and Human Services regarding its proposal for changes to HIPAA regarding modifications to the Privacy Rule. Specifically, HHS proposed modifications to standards for the privacy of individually identifiable health information. WPF supports many of the changes proposed in the NPRM.

Emerging Technologies, Human Subject Research, and the Common Rule: High level overview of the 2023 OHRP Research Community Forum

Earlier this month, WPF attended a joint conference focused on the shifting dynamics of how the Common Rule that governs human subject research in the US will be interpreted amidst new technological shifts such as AI. The department of Health and Human Services is seeking to define what the next steps and new policy frameworks should be to ensure the Common Rule protects individuals in current and future research environments. Details on the presentations, conversations, and key takeaways in the post.