PHRs have been promoted in recent years as being an empowering panacea of benefits for consumers, but there has been little meaningful discussion of the complex and serious privacy issues PHRs can raise. For example, very few consumers know that not all PHRs are protected by HIPAA, the federal privacy rule that applies to medical files held at, for example, hospitals.
In PHRs, important information about privacy procedures and policies is contained in the fine print, and the fine print really matters. That’s because some PHRs are covered under HIPAA privacy protections, but many PHRs are not covered under HIPAA privacy protections. Few consumers understand that their health care files are not always protected under HIPAA when their files are in a PHR.
New publication | PHRs and privacy — The World Privacy Forum has published a new legal and policy analysis examining Personal Health Records — or PHRs — and the privacy issues associated with them. This analysis, Personal Health Records: Why Many PHRs Threaten Privacy, was prepared by Robert Gellman for the World Privacy Forum. The analysis finds that significant, serious threats to privacy exist in some PHRs.
This report is a legal analysis of PHRs and what privacy issues are at stake in PHRs, especially PHRs that exist outside of HIPAA, the federal privacy rule.
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.