Health Privacy

About health privacy, World Privacy Forum key health privacy resources

The World Privacy Forum is extremely active in health privacy, with a long and successful track record of work in this area. We have done groundbreaking work in the area of medical identity theft, as well as substantive analysis and education on critical privacy aspects of health data such as medical research, genomics, and many other issues. 

Some of our most frequently accessed health privacy resources include:

* A Patient’s Guide to HIPAA

* Medical Identity Theft Page (resources, reports, more)

* Health privacy tagged materials 

* HIPAA tagged materials 

* Electronic Health Records tagged materials 

* Common Rule and Human Subject Research Protection tagged materials

* Genetic privacy tagged materials 

We have many more publications and resources. For a full list of topics and publications, see our key issues page.

See below for health privacy news and content by date.

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.

Update: World Privacy Forum’s NHIN Timeline updated to reflect changes in AHIC

NHIN update — The National Health Information Network, or NHIN, is part of a major undertaking to digitize and network the health care sector. From electronic health records to multi-state health information hubs, the U.S. government’s goal is to modernize and move health care information from paper to digital. The Department of Health and Human Services is the primary mover behind this initiative, which is complex and multi-faceted. The World Privacy Forum keeps a chronology of NHIN events as a public service. The NHIN timeline has been updated to reflect changes in AHIC, a group that is charged in part with ensuring privacy and confidentiality in the NHIN and other aspects of health care modernization. AHIC is set to transition to a “public-private partnership,” a move that will need to be watched closely to ensure robust consumer involvement.

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 and EFF submit comments on AHRQ plan for national healthcare database

AHRQ / databases | medical privacy — In June, the Agency for Healthcare Research and Quality (AHRQ) published a request for information about its plan to create a “public/private” national database of healthcare information tentatively called the “National Health Data Stewardship entity.” WPF and EFF raised questions about ownership and management of the proposed database (Would this database fall under HIPAA? Would it fall under the Privacy Act of 1974?), questions about identifiability of patients in the database, and suggested that a full-time, independent privacy officer should be established for the program from the inception of the planning stages. The comments also discussed the numerous questions relating to data security (including medical identity theft) and data quality, as well as consent, access, and opt-out procedures for patients that the proposed national database raises.

World Privacy Forum responds to June 2007 NCVHS recommendations to the Secretary of HHS regarding health care information at non-HIPAA covered entities

Medical privacy | NCVHS | HIPAA — The World Privacy Forum has sent a letter to Dr. Simon P. Cohn, Chairman of the National Committee on Vital and Health Statistics, supporting the Committee’s formal conclusion that all entities that create, compile, store, transmit, or use personally identifiable health information should be covered by a federal privacy law. More needs to be done about health care data that is left unprotected by HIPAA. The Forum’s letter included a discussion of two HHS programs that operate outside of HIPAA: FDA RiskMAPS, and the National Institutes of Health, which is not a covered entity under HIPAA.