Patient Privacy

Briefing Paper – Responses to Medical Identity Theft: Eight best practices for helping victims of medical identity theft

Version 1: October 16, 2007   The World Privacy Forum, as part of its ongoing in-depth research into medical identity theft issues and responses, has outlined 8 best-practice responses to the crime by the health care sector. These best practices are based on interviews with victims, providers, and other stakeholders. These 8 best practices are

World Privacy Forum gives keynote speech to AHIMA on medical identity theft; outlines 8-point best-practice responses to the crime

Medical identity theft | AHIMA — Executive director Pam Dixon spoke to thousands of AHIMA delegates in Philadelphia sharing the latest information on medical identity theft and outlining 8 best practice responses to the crime for the health care sector. Dixon specifically asked for the creation of national guidelines for helping medical identity theft victims, the ability for victims to set red flag alerts in their health care files, that providers train and have dedicated personnel to help medical identity theft victims, “john and jane doe” file extractions, a focus on addressing insider access to patient information, risk assessments specifically for medical identity theft, and educational efforts. The information in the speech was based on the latest World Privacy Forum research in the area of medical identity theft.

Public Comments: World Privacy Forum files comments on CMS plan to allow release of patients’ protected health information from Medicare database in some circumstances; benefits do not outweigh the risks

Medicare – CMS — The World Privacy Forum filed extensive pubic comments on the substantive changes to the Medicare database release policy that the Centers for Medicare and Medicaid Services (CMS) has proposed in a System of Records Notice. As it currently stands, CMS is planning to release the individually identifiable protected health information of patients in the Medicare database to third parties in some circumstances. CMS has not established strong enough checks and controls on its release policy, and it has not explained how it is able to do this under HIPAA. The comments state that CMS has an obligation to explain how each routine use in its new policy is consistent with the authority in the HIPAA privacy rule. If a routine use allows disclosures that are broader than those permitted by HIPAA, then the routine use must be narrowed so that it is consistent with HIPAA. The comments also note that nothing in the CMS notice discusses substance abuse rules and other legal restrictions of the protected health data. The World Privacy Forum asked CMS to specify that the qualifications of any data aggregators who may potentially receive the data exclude any entity that sells other consumer data for any general business, credit, identification, or marketing purpose.

World Privacy Forum requests adoption of a “no stakeholders left behind” policy in AHIC successor plans

AHIC successor | health care privacy — The World Privacy Forum offered public comments on HHS’ American Health Information Community (AHIC) successor plans, urging that HHS adopt a “no stakeholders left behind” policy as it forms the new public/private AHIC. The Forum’s analysis of the AHIC Successor White Paper concluded that the current succession plans lack processes and checks that would ensure meaningful consumer participation, and that the AHIC successor plans as they currently stand do not bode well for a robust role for privacy or consumer groups in the new AHIC. Specific issues the World Privacy Forum discussed in its comments included fee structures, membership, handling conflicts of interest, stakeholder issues, privacy and identifiability issues, and the need for the new AHIC to achieve credibility.

World Privacy Forum testifies at FDA advisory committee hearing on the iPledge program; requests attention to privacy issues

iPledge Program | FDA — The World Privacy Forum testified before the Dermatologic and Ophthalmic Drugs Advisory Committee and the Drug Safety and Risk Management Advisory Committee of the Food and Drug Administration regarding privacy issues related to iPledge, a mandatory program for patients taking the drug Accutane or isotretinoin generics. The FDA has stated that the program, which it requires four drug manufacturers to have in place, does not fall under HIPAA. The program collects substantive amounts of patient information. The Forum urged the FDA to set privacy standards for all RiskMAPs in general, and to resolve privacy issues in the iPledge program specifically. The Forum requested that all marketing provisions of the iPledge program privacy policy be removed, that patients be expressly informed the program does not fall under HIPAA, and that patients be given a printed copy of the iPledge program privacy policy, among other requests.