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.

Personal Health Records: PHRs and Subpoenas

Health records, like just about any other record containing personal information held by a third party, can be subpoenaed under a variety of circumstances. For example, a consumer’s records could be sought in a tort suit (e.g., auto accident or medical malpractice), in a divorce or other family lawsuit, or sought if the records are relevant to someone else’s lawsuit. The rules governing subpoenas for health records are complex, and HIPAA includes some significant procedural protections.

Personal Health Records: PHRs and Marketing

Perhaps the biggest single concern about commercial PHRs is the possibility that a consumer’s health information will leak into the marketing system. The terms under which a PHR operates could allow the sale or rental of consumer information in the same way that magazines, catalog companies, magazines, charities, or other merchants and activities share information with limited or no consumer knowledge or consent. Consumers generally have some sense about how readily companies and agencies pass personal information around, but they do not expect the same kind of sharing when it comes to personal health information.

Personal Health Records: The PHR as a Depository

Some PHRs present themselves as a depository of health information under the control of the consumer. The suggestion is that the records have inherent privacy protections because the consumer has some choices or control over the record, including who may see, add to, or change the record. By contrast, covered entities under HIPAA can disclose health records to many institutions for many purposes without consumer consent. That is one of the controversial aspects of HIPAA. HIPAA allows many disclosures without the consent of – and indeed over the objections of – the consumer.

Personal Health Records: PHRs and Linkage

Some privacy protections exist because independent health care providers maintain separate records about consumers. A dentist has one set of records; a family doctor has another set. It will often be the case that the two sets of records are not linked or shared routinely. However, those who obtain health care from a single health maintenance organization may already have centralized records. Linkage of health records offers some advantages, but not all linkages are necessarily welcome to consumers.

Personal Health Records: PHRs and Security

Security is an important part of privacy. Are PHR records more secure? The answer depends on who maintains the PHR and whether the security of the PHR is sufficient. Information held by health care vendors and insurers is subject to the HIPAA health record security rule. For what it is worth, the HIPAA security rule has attracted less criticism than the HIPAA privacy rule. Whether any given health record keeper is actually doing a good job of complying is hard to say.