U.S. Department of Health and Human Services

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.

Public Comments: August 2007 – AHRQ Joint Comments …..World Privacy Forum and EFF submit comments on AHRQ plan for national healthcare database

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. Read the joint comments (PDF)

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.

Public Comments: August 2007 – NCVHS letter Update to privacy laws and regulations required to accommodate NHIN data sharing practice

We particularly note the Committee’s observation that the non-covered entities “may even sell personal health information without authorization for the purpose of marketing or other purposes that consumers may find objectionable.” The World Privacy Forum agrees with the Committee, and believes that the use of identifiable patient health care information for marketing is a disturbing possibility. New institutions are being developed and implemented to exploit gaps in HIPAA that allow use of patient data for marketing purposes. Action to close those gaps is needed urgently. The Committee’s letter is a small step in that direction.