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.

Nov 12 2019

WPF to testify before NCVHS on emerging privacy concerns in health privacy — Beyond Digitization: Artificial Intelligence, APIs, and health privacy

WPF Executive Director Pam Dixon will testify before the full committee of the National Committee on Vital and Health Statistics (NCVHS) regarding emerging privacy concerns in the healthcare environment, including the role of artificial intelligence, patient authorizations, and automated access to patient health information. The NCVHS is the statutory [42 U.S.C. 242k(k)] public advisory body

Sep 20 2019

HHS takes first-ever enforcement action under HIPAA’s right of access to health records

The Office of Civil Rights in the US Department of Health and Human Services has taken its first enforcement action under the HIPAA right of patient access to health records. HHS announced that it fined a health care provider $85,000 for failing to provide health care records to a patient upon written request, stating in

Mar 05 2019

A Patient’s Guide to HIPAA: New eBook + complete update

A PATIENTS’ GUIDE TO HIPAA: NEW E-BOOK + COMPLETE UPDATE For immediate release 5 March 2019 Oregon: World Privacy Forum’s classic and highly popular health privacy resource for consumers, A Patient’s Guide to HIPAA, has been given a complete end-to-end update and is now also available as an ebook. A Patient’s Guide to HIPAA

Jan 28 2019

WPF responds to HHS and urges it to keep privacy protections in HIPAA strong

WPF has written to the US Department of Health and Human Services advising them on their Request for Information (RFI) about possible changes to HIPAA privacy and security protections. The RFI has a number of suggestions that, should they become part of a formal proposal, would significantly weaken HIPAA privacy protections.

Jan 22 2019

2019 updates to Interactive Medical Data Breach Map

We have updated our medical data breach map to bring it current to January 2019. This interactive map displays the location of each medical data breach recorded at the US Department of Health and Human Services from 2009-2018. To get the most from the map, you can view breaches by year, by region, and in a simple text list.

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.