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.

Some Californians receive emails from health insurer with personal details exposed: potential CalINDEX implications?

This week the New York Times reported that some California members of health insurer Anthem Blue Cross received disturbing emails with exposed subject lines related to their sensitive medical information. From the article: “But the emails’ subject lines included member-specific demographic details like age range and language. They also listed possible medical screening tests —

WPF Universal Periodic Review Comments — The Right to Health Privacy: Human Rights and the Surveillance and Interception of Medical and Health Records by Security Agencies

The World Privacy Forum provided an intervention for the Civil Society Consultation on the Universal Periodic Review of the United States recommending that health information should only be disclosed for national security purposes pursuant to a judicial warrant, and that there must be procedures under which record keepers can challenge national security demands for health

Video: Can I delete my files from a Health Information Exchange?

You can certainly ask to have your records deleted, but it may not be that easy. After a health record has been created and exchanged via an HIE, how your record is managed in that HIE is going to vary considerably. But generally speaking, it is rare for any health care provider to outright delete a health file.

Video: How to request all of your medical files from a health information exchange

HIE stands for “Health Information Exchange.” We encourage all patients to request a copy of their medical records to check for errors, whether in paper or digital format. Begin any process of HIE discovery with your health care provider. It will likely be your health care providers who are able to let you know if your records have been exchanged, and if so, where.