U.S. Department of Health and Human Services

Public Comments: October 2011 – WPF urges HHS to do more to protect the privacy of medical research subjects

The World Privacy Forum filed extensive comments with the US Department of Health and Human Services about its proposed changes regarding the rules governing human subject medical research. In the comments, WPF noted that the HHS approach to privacy for research subjects was incomplete and did not use all Fair Information Practices. WPF strongly urged HHS to revise its proposal on a number of issues, including consent and the use of biospecimens in research. The World Privacy Forum is urging HHS to acknowledge that the realm of health data that is truly non-identifiable has shrunken remarkably, for example, biospecimens with DNA cannot be considered non-identifiable anymore. “In our comments, we are requesting that HHS give individuals the opportunity to make choices about the use of their own health data and specimens,” said Executive director Pam Dixon. WPF also stated in its comments that “A central database with identifiable information about participants in human subjects research is a terrible idea.” (See p. 21 of WPF comments.)

WPF files substantive comments on HIPAA

Medical privacy and HIPAA — 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.

Public Comments: August 2011 – Proposed changes to the HIPAA Privacy Rule regarding Accounting of Disclosures under the Health Information Technology for Economic and Clinical Health Act

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.

Public Comments: December 2010 Personal Health Records and online advertising

The World Privacy Forum filed comments today about how medical records and other health information is intersecting with online advertising and online activities. The WPF comments were filed with the Department of Health and Human Services in response to its request for comments on personal health records, privacy, and social media.

WPF comments about Personal Health Records and online advertising

Health privacy — The World Privacy Forum filed comments today about how medical records and other health information is intersecting with online advertising and online activities. The WPF comments were filed with the Department of Health and Human Services in response to its request for comments on personal health records, privacy, and social media.