Health Privacy

The World Privacy Forum today filed its comments on the proposed changes to the HIPAA privacy rule, supporting some proposed changes and suggesting additional changes to enhance patient choice. In particular, the WPF supports the new patient right to an access report that has been added (p. 4), and has requested that Health Information Exchanges also be required to provide accountings of disclosures to patients (p. 18). The WPF generally argued that HHS needs to look forward and allow changes in information technology to fully benefit patients by providing the facility for more accounting rather than less (pp. 2-3). If the HIPAA rule gives patients a greater ability to monitor how their information is used and disclosed, patients will pay attention and requests for accounting of disclosures will become more common.

The World Privacy Forum filed comments with the Federal Trade Commission regarding its consent decree against Ceridian regarding a substantial data breach. WPF has requested that the Commission present more facts in the case to the public, and has also requested more clarity about the FTC complaint process, noting that it is not a transparent process for the public.

Consumers receive breach letters — Pharmaceutical manufacturer GSK, maker of drugs Paxil, Boniva, Advair, and many others, sent a letter to consumers who had registered on one or more of its product websites. Due to the Epsilon data breach, registrants’ names, email, and the product they registered for was breached. Information people give to a company via a pharmaceutical product web site such as this is not usually covered under HIPAA. See our Patient’s Guide to HIPAA for more on what is covered under HIPAA and what is not. WPF recommends that consumers use a “throwaway” or temporary email address if deciding to register at a Pharmaceutical product web sites.

Joint Comments on HIEs — California has proposed regulations for health information exchange projects in the state. WPF has submitted comments encouraging more privacy protections, and we are joined in our comments by Privacy Activism and the Center for Digital Democracy. One key request in the comments is that California not allow patient consent to be waived in HIE projects. We are also requesting that California create a unified web listing of its HIE projects for increased transparency and to facilitate patient access to HIE information and policies.

California has proposed regulations for health information exchange projects in the state. WPF has submitted comments encouraging more privacy protections, and we are joined in our comments by Privacy Activism and the Center for Digital Democracy. One key request in the comments is that California not allow patient consent to be waived in HIE projects. We are also requesting that California create a unified web listing of its HIE projects for increased transparency and to facilitate patient access to HIE information and policies.