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.
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.