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.

Jun 22 2015

WPF files comments on wellness programs and privacy: urges EEOC to address privacy challenges

The World Privacy Forum filed comments with the Equal Employment Opportunity Commission about wellness programs and related privacy impacts to individuals. Many Americans now take part in employer wellness programs, and they are increasingly and justifiably concerned about the sensitive information these programs are gathering, sometimes in return for incentives such as discounts on pricing for health insurance. These comments to the EEOC address some of the most significant challenges individuals face, including voluntariness, fairness, due process, and information sharing outside of HIPAA.

Jun 15 2015

WPF Executive Director named to OECD health privacy advisory group

FOR IMMEDIATE RELEASE June 15, 2015 San Diego — Pam Dixon, Executive Director of the World Privacy Forum, has been named to an OECD Advisory Group that will help guide the development of the draft OECD Council recommendations on privacy-protective approaches for the use of health data. This work will be pursued under the umbrella of

Apr 10 2015

Video: Healthy Cities Project in China — 20 million health records in the cloud (CES 2015, interview)

The Healthy Cities Project in China is one where mobile devices, mobile health mini-hubs, and sensors are the key way that patients, doctors, government, and enterprises can input, monitor, and access vital health statistics and other information in the cloud. Twenty million people already use this system. Healthy Cities is important for study, because it is a fully established infrastructure in those cities in China where it has been deployed. In the US, the Healthy Cities project is being studied by academics to see how it could be replicated in the US marketplace.

Mar 27 2015

Video: Robots and remote doctor visits — telemedicine updates (CES 2015, interview, Double Robotics)

Telemedicine is rapidly advancing. The Mayo Clinic, Kaiser, and other health providers are already in testing to see how doctors can use sleek, rolling telemedicine robots to conduct remote patient interactions and allow for better visual diagnosing. In this video, the company Double Robotics walks us through how the robots look, move, and operate (via an iPad) and how they are already being used in clinical settings today.

Mar 02 2015

Video: The New World of Health Sensors

This video is part of our Health Technology series which explores emerging and important health technologies Health sensors — devices that can detect blood pressure and other bio readings — have advanced tremendously in the past few years. While many are familiar with fitness devices that monitor activities such as number of footsteps, new and very sophisticated

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.