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 04 2020

Identity Week: WPF webinar on global contact tracing apps

Executive Director Pam Dixon gave a one hour webinar 4 May 2020 on global contact tracing apps and technology focusing on case studies in the US, UK, India, South Korea, Singapore, Australia, and other jurisdictions. Recommendations and lessons learned are included, as well as audience questions. Event: Festival of Identity Free Webinar Series Webinar: Proportionate

Apr 15 2020

April 15, 2020 WPF Statement on the COVID-19 Community Based Testing Sites HIPAA Waiver

In response to the COVID-19 (coronavirus) pandemic, the U.S. Department of Health and Human Services announced a HIPAA waiver April 9, 2020 regarding Community Based Testing Sites, which waives enforcement of all HIPAA privacy and security protections and data breach rules from some health care activities affecting COVID-19 testing. This statement from WPF includes the following information:
-What are the changes the Community Based Testing Sites HIPAA waiver creates?
-What are the privacy concerns?
-WPF recommendations to correct the privacy problems in the Community Based Testing Sites HIPAA waiver
-Background on HIPAA waivers and a list of all current waivers in force

Apr 06 2020

April 6, 2020 WPF Statement on COVID-19 Business Associate HIPAA Waiver

In response to the COVID-19 (coronavirus) pandemic, the U.S. Department of Health and Human Services announced a HIPAA waiver April 2, 2020 regarding Business Associates. The April 2 waiver is consequential and poses significant privacy challenges. This statement from WPF includes the following information:
-What are the changes to HIPAA the April 2 waiver creates?
-What are the privacy concerns?
-WPF recommendations to correct the problems in the April 2, 2020 waiver

Apr 02 2020

Coronavirus Testing and Privacy: Frequently Asked Questions

This FAQ provides responses to the most frequently asked questions about coronavirus and privacy, especially COVID-19 testing, records, and health privacy for people in, or visiting, the U.S.

Mar 18 2020

March 18 WPF Statement on COVID-19 Telehealth HIPAA Waiver

In response to the COVID-19 (coronavirus) pandemic, the U.S. Department of Health and Human Services announced some changes in HIPAA practices. This statement from WPF includes the following information:
-What are the changes to HIPAA during the COVID-19 emergency?
-What are the privacy concerns?
-WPF recommendations to ensure patient privacy is protected

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.