Personal Health Record (PHR)

Health privacy and HIPAA — The World Privacy Forum filed comments with the US Department of Health and Human Services today in response to its Request for Information about possible changes to the HIPAA health privacy rule. WPF strongly supported patients’ current right to request a history of disclosures of their medical files, and requested an expansion of this right. WPF noted in its comments to HHS that “An individual cannot fully protect his/her privacy interest in a health record (and most other records) unless he/she has a right of access to the record, the right to propose a correction, and the right to see who has used the record and to whom it has been disclosed. Each of these elements is essential.”

Data Breach of Health Records – FTC — The World Privacy Forum filed extensive comments with the Federal Trade Commission today regarding its notice of proposed rulemaking for data breaches of information containing actual health care information or health care-related information. The FTC rulemaking will apply to a variety of record holders, especially vendors of personal health records. The Forum supported much of the FTC’s proposed rulemaking, finding the rulemaking generally thoughtful and careful. In some areas, the Forum urged the FTC to narrow and further define and strengthen the proposed rule. The World Privacy Forum urged the FTC to tighten language around scope, the definition of “personal health record,” law enforcement delays of consumer notification, and urged the FTC to further clarify the definition of what falls under the category of “de-identified data.” Citing the research of Dr. LaTanya Sweeney and others, the Forum urged the FTC to require commercial companies and others holding health care data that has been partially de-identified to still report those breaches to the FTC and the public, and to monitor for re-identification.

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.

Consumer advisory | PHRs and privacy — The World Privacy Forum has issued a consumer advisory about the privacy of PHRs to help consumers understand and approach the complex privacy issues PHRs can raise. Consumers need to know that not all PHRs protect privacy in the same way, and some PHR systems can undermine consumer privacy in serious ways that consumers may not be expecting.