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.

Sep 16 2020

COVID-19 and HIPAA: HHS’s Troubled Approach to Waiving Privacy and Security Rules for the Pandemic

The COVID-19 pandemic strained the U.S. health ecosystem in numerous ways, including putting pressure on the HIPAA privacy and security rules. The Department of Health and Human Services adjusted the privacy and security rules for the pandemic through the use of statutory and administrative HIPAA waivers. While some of the adjustments are appropriate for the emergency circumstances, there are also some meaningful and potentially unwelcome privacy and security consequences. At an appropriate time, the use of HIPAA waivers as a response to health care emergencies needs a thorough review. This report sets out the facts, identifies the issues, and proposes a roadmap for change.

Sep 15 2020

WPF to discuss COVID-19 lessons learned and challenges ahead at OECD – Global Privacy Assembly Workshop

WPF Executive Director Pam Dixon will be presenting at an OECD and Global Privacy Assembly workshop on the risks, challenges, and potential solutions regarding the intersection of COVID-19 and the uses of identity in a global public health crisis. Event details: COVID-19 and privacy virtual Workshop on “The road to recovery: Lessons learned and challenges ahead”, hosted

Jul 15 2020

HHS makes significant changes to COVID-19 reporting process

The Department of Health and Human services has announced major changes for hospitals’ COVID-19 data reporting processes. HHS has also made changes to the types of data that hospitals must report, expanding the data collection. This includes new information requests for disaggregated information about adult and pediatric patients, to name a few of the changes. The reporting requirements do contain patient flows, but there are still unknown aspects to the new COVID-19 reporting requirements regarding individual-level data and certain privacy considerations.

May 19 2020

May 19, 2020 WPF Statement regarding HHS Secretary’s Section 1135 COVID-19 HIPAA Waiver

This statement discusses a 72-hour “statutory waiver” of 5 basic HIPAA rights (including the right to confidential communications). The waiver is triggered by the Secretary of HHS and applies for a 72-hour period beginning upon implementation of a hospital disaster protocol. This statement discusses this waiver, what it is, what is means, who is impacted, and our recommendations.

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

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.