Electronic Health Records

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 | HHS HITECH Breach Notification — The World Privacy Forum filed comments on the HHS data breach rulemaking and asked for substantive changes in several areas. In particular, WPF asked HHS to expressly state a requirement for a breach risk assessment in the final rule itself, and to set a requirement that the risk assessment must be conducted by an independent organization. The WPF also asked that HHS set breach risk assessment standards so that there is some uniformity and guidance as to what constitutes an appropriately rigorous risk assessment when a breach occurs. In the comments, WPF also discussed the relationship between medical identity theft and medical data breach and how this impacts patients and consumers.

Health data breach rulemaking — The Federal Trade Commission has issued its final Health Breach Notification Rule for vendors of Personal Health Records and related entities, as required under ARRA, The American Recovery and Reinvestment Act of 2009. The initial proposed Health Breach Notification Rule was generally thoughtful and thorough. The World Privacy Forum submitted extensive comments on the proposed rule both supporting parts of it and making some suggestions for changes. The FTC incorporated several specific WPF suggestions into the final rule. In particular, the FTC incorporated the applicability of the rule to foreign entities with U.S. customers (Final Rule p. 17), and the applicability of the rule to search engines appearing on Personal Health Record web sites (Final Rule p. 34). The new rule will be published in the Federal Register shortly; until then, it is available at the FTC web site. Also available is a form that entities covered under this rule can use to report data breaches to the FTC. The Health Breach Notification Rule will be effective 30 days after publication in the Federal Register, and full compliance with the rule will be required beginning 180 days after publication.

“This guide is not just a retread of what HIPAA is and does,” said Pam Dixon, executive director of the World Privacy Forum. “Our guide gives patients practical details and strategies on how they can use the law to protect their privacy and navigate the medical system. Best of all, it is easy to use.”

Medical ID theft — Based on interviews with numerous victims and others involved in the crime of medical identity theft, and based on our own work with victims, the World Privacy Forum has added some new information to its 2006 consumer tips for medical identity theft. We have also slightly updated some of the older tips based on new information. The Forum has also updated its medical identity theft landing page to reflect our new and ongoing work in this area.