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.

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.

Video: Correcting and amending medical records in an HIE

HIE stands for “Health Information Exchange.” We encourage all patients to request a copy of their medical records and check for errors, whether on paper or digital. If you have received a copy of your medical record from your doctor and you find mistakes or errors, it is a good idea to correct those files as soon as possible with that health care provider. It’s also important to see if incorrect information has been circulated into a Health Information Exchange, and get it corrected there as well. See more ….

Video: Do I have to give permission for my medical information to be in a Health Information Exchange? (Health Information Exchange Series)

This video is part 3 of a 14-part WPF video series on health privacy and health information exchanges. Many patients may be surprised to learn that a health care provider does not need your permission to share your medical information for treatment purposes within an HIE, just as a doctor does not need permission to send your records via fax to another doctor for treatment purposes. This is true even if your health record is going to a doctor you have never met before. See more ….

Video: HIE versus Fax… (Health Information Exchange Series)

This video is part 2 of a 14-part WPF video series on health privacy and health information exchanges. Doctors have been using fax machines to send and exchange patient records for years. We know that an HIE allows medical records to be shared electronically between health care providers. But how does an HIE differ — really — from faxes? What changes, beyond the obvious?