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: Introduction

Personal health records – or PHRs – are a relatively new phenomenon in health care today. As discussed here, a PHR is a health record about a consumer that includes data gathered from different sources (e.g., health care providers, insurers, the consumer, and third parties such as gyms and others) and is made accessible, often online, to the consumer and to those authorized by the consumer. Businesses large and small are moving to take advantage of the potentially lucrative new business model PHRs provide, especially as leveraged through the Internet. Some of the newest PHR players include large and well-known technology companies, but some health care providers, insurers, and employers also promote PHRs. There are dozens of different PHR vendors.

Personal Health Records: Discussion

The HIPAA privacy rule provides a degree of privacy protection for covered health records. The rule has problems and gaps, but it does establish minimum national privacy standards for disclosure, access, correction, and other elements of fair information practices. State laws that provide additional privacy protections remain in effect and can provide additional legal protections for privacy.

Personal Health Records: PHRs and Privilege

Many people are aware that health information may be privileged, but few – including some physicians – fully understand what that means. The physician-patient privilege (and the sometimes separate psychotherapist-patient privilege) offers some protections for confidential communications between physician and patient.

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.