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.
This Jan. 30, 2014 report discusses a new right to restrict disclosure of health information under the updated HIPAA health privacy rule. The new provision called “Pay Out of Pocket,” also called the “Right to Restrict Disclosure” gives patients the right to request that their health care provider not report or disclose their information to their health plans when they pay for medical services in full. Navigating the new right will take effort and planning for patients to utilize effectively. This substance of this report is about the new patient right to restrict disclosure, and how patients can use it to protect health privacy.
January 15, 2014: Pam Dixon will be talking about how some health kiosks that measure blood pressure turn around and share lead information from the consumers using the kiosks with insurance companies. Tune in to NPR’s All Things Considered to hear Pam Dixon discuss the privacy risks of health kiosks in supermarkets and drug stores.
WPF Comments on Genomic Data Sharing Policy for sharing, for research purposes, of large-scale human and nonhuman genomic data (NIH) Background: The National Institutes of Health published a draft Data Sharing Policy for human and non-human genomic data. The sharing is for research purposes. The World Privacy Forum comments focus on human genomic privacy. Our
San Diego, CA — The World Privacy Forum is very pleased to announce the publication of a major undertaking, the complete update and revision to our landmark Patient’s Guide to HIPAA. The new guide reflects the changes in HIPAA that took effect September 23, 2013. The Patient’s Guide to HIPAA is a landmark publication because it is the first and to our knowledge — only complete guide written expressly for patients. It offers a roadmap through the thicket of dense health privacy laws and rules that many patients have questions about. The purpose of this guide is to help patients understand how to make health privacy laws work to protect their privacy. Longtime World Privacy Forum contributor Bob Gellman is primary author of the Guide, including the new version. Begin exploring the update at the HIPAA Guide Home: http://www.worldprivacyforum.org/2013/09/hipaaguidehome/ .
In this guide, we talk about laws, rules, regulations, act, and statutes. Lawyers can find real and technical differences between these terms, but the differences don’t matter much to patients. For our purposes, the terms are generally interchangeable references to legally binding policies or obligations.