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.

May 06 2021

WPF comments on HHS proposal to change HIPAA Privacy Rule

WPF filed comments today with the Department of Health and Human Services regarding an important Notice of Proposed Rulemaking that, if adopted, will bring substantial changes to patients’ electronic health records and how they are managed, among other issues. In general, we found much to support in the NPRM. However, there are sections of the

Apr 20 2021

WPF Statement to the Civil Society Consultation on Sustainable Health Security Preparedness and Response, C20, 2021

The World Privacy Forum participated in the C20 Civil Society Consultation on Sustainable Health Security Preparedness 20 April, 2021, part of the preparatory work for the G20 health-related declaration. (Rome Declaration.) In our attached statement to the C20 / G20, we outline three key requirements to allow safe and sustainable health data ecosystem knowledge utilization, including privacy and effective data governance, interoperability, and robust inclusion of LMICs and vulnerable or
marginalized populations in standards development.

Mar 03 2021

WPF urges US Federal Trade Commission to re-examine data breach notification requirements for health data in Flo Health proposal

The World Privacy Forum has submitted comments to the FTC regarding its proposed consent order In the Matter of Flo Health, Inc. requesting that the FTC conduct further analysis regarding the FTC Health Data Breach Rule and its potential applicability to the alleged unconsented sharing of women’s pregnancy, menstruation, mental health, and other data with

Feb 24 2021

WPF comments on European Commission proposal for new Health Authority

The European Commission has proposed the creation of a new European Health Emergency Preparedness and Response Authority, HERA. WPF provided comments regarding the proposal, urging the Commission to ensure from the outset that HERA will fulfill its mission with a focus on data interoperability and will include specific data governance and protection measures that will analyze

Oct 27 2020

World Health Organization updates its data sharing principles; WPF participant in external expert advisory group

This summer, the World Privacy Forum served as a member of the World Health Organization’s External Expert Group on Data Principles. We are pleased to announce that WHO has now published its updated data principles and data sharing policy, as of October 2020. While there are additional items that WPF would like to address in

New Report: Risky Analysis: Assessing and Improving AI Governance Tools

We are pleased to announce the publication of a new WPF report, “Risky Analysis: Assessing and Improving AI Governance Tools.” This report sets out a definition of AI governance tools, documents why and how these tools are critically important for trustworthy AI, and where these tools are around the world. The report also documents problems in some AI governance tools themselves, and suggests pathways to improve AI governance tools and create an evaluative environment to measure their effectiveness. AI systems should not be deployed without simultaneously evaluating the potential adverse impacts of such systems and mitigating their risks, and most of the world agrees about the need to take precautions against the threats posed. The specific tools and techniques that exist to evaluate and measure AI systems for their inclusiveness, fairness, explainability, privacy, safety and other trustworthiness issues — called in the report collectively AI governance tools – can improve such issues. While some AI governance tools provide reassurance to the public and to regulators, the tools too often lack meaningful oversight and quality assessments. Incomplete or ineffective AI governance tools can create a false sense of confidence, cause unintended problems, and generally undermine the promise of AI systems. The report contains rich background details, use cases, potential solutions to the problems discussed in the report, and a global index of AI Governance Tools.
National IDs Around the World — Interactive map

About this Data Visualization: This interactive map displays the presence...
Report: From the Filing Cabinet to the Cloud: Updating the Privacy Act of 1974

This comprehensive report and proposed bill text is focused on the Privacy Act of 1974, an important and early Federal privacy law that applies to the government sector and some contractors. The Privacy Act was written for the 1970s information era -- an era that was characterized by the use of mainframe computers and filing cabinets. Today's digital information era looks much different than the '70s: smart phones are smarter than the old mainframes, and documents are now routinely digitized and stored and perhaps even analyzed in the cloud, among many other changes. The report focuses on why the Privacy Act needs an update that will bring it into this century, and how that could look and work. This work was written by Robert Gellman, and informed by a two-year multi-stakeholder process.