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.

Aug 04 2021

C20 – G20 Global Dialogue on Health, WPF statement

On August 4, 2021, WPF participated as a member of the Civil20 – G20 Global Dialogue on Health. The dialogue was moderated by C20 Global Health co-chair Rachel Ong, with concluding comments by co-chair Kurt Frieder. Davide La Cecilia, Diplomatic adviser to the Italian Minister for Health and former Ambassador of Italy to Ukraine, participated

Jul 01 2021

WPF urges FTC Chair and Commissioners to update FTC Health Breach Notification Rule

The FTC held an historic open FTC Commission meeting, during which the Chair and Commissioners conducted their business openly and also provided an opportunity for public comments. The World Privacy Forum was selected to provide a public comment, which focused on the need to update the Health Breach Notification Rule.

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

Global Visualization of Countries with Data Privacy Laws, Treaties, or Conventions

Background and Methodology: The conceptualization and initial research for this...
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...