The federal Agency for Healthcare Research and Quality (AHRQ) is proposing to establish a national “entity” to set rules and standards for collecting, sharing, using, and reporting health-care data. The AHRQ, a division of the Department of Health and Human Services, is requesting public comments on its proposal to create a National Health Data Stewardship Entity (NHDSE).   

If established, the NHDSE would be authorized to undertake “a wide range of activities [to] advance health data exchange and use, including the development of measures and setting data transmission/IT technical standards.”  AHRQ stresses, “While all of these activities are important, the entity's responsibilities would primarily focus on specific issues relating to data collection, aggregation, analysis, and sharing.” 

Regarding data collection, the agency wants to “set policies, rules and standards for collecting public and private sector data from relevant stakeholders, including providers, employers, health insurance plans and others…” It notes that based on current law, allowable data uses may include quality and efficiency improvement, consumer reporting, accountability, and pay-for-performance programs.

The agency also proposes setting policies, rules, and standards for data access and sharing.  For example, the new entity would determine “who should have access to data and applicable limitations, such as confidentiality and privacy rules; should consider policies which allow contributors, including both public and private sector entities, to have access to their own data as well as information which allows them to compare their data against benchmarks.”  It would also develop “guiding principles” for public reporting.

Twila Brase, president of Citizens’ Council on Health Care (CCHC), responded:  “We believe the proposed National Health Data Stewardship Entity (NHDSE) would open wide the vaults of private medical data, authorizing the exposure of more than 300 million Americans to unwanted disclosures…The proposed NHDSE would nationalize ownership and control of private patient data….”  The entire CCHC letter is online at: http://cchconline.org/pdf/PubCommHealthDataStewardshipRFI_Final.pdf.

An important question for all to consider is whether Congress or a federal health agency should be empowered to establish health-privacy rights for all Americans.  Brase stresses that under AHRQ’s proposal to establish a national data-collection and sharing entity, “A group of bureaucrats, corporate executives and political appointees would set the rules for how all private [health-care] data is disclosed and used.”

Public comments on AHQR’s proposal must be received by Friday, July 27:

• Electronic responses are preferred and should be addressed to: steward@ahrq.hhs.gov
• Written responses should be addressed to:

P. Jon White, M.D.
Health IT Director
540 Gaither Road
Rockville, MD 20850

• AHRQ notes: “Any information submitted will be made public. Do not send proprietary, commercial, financial, business confidential, trade secret, or personal information that should not be made public.”

Citizens should also share their own views about health-privacy rights with their elected officials, advising them as to who should establish privacy standards/rights: unelected government employees or members of Congress?

AHRQ’s Request for Information regarding the NHDSE is online at: http://a257.g.akamaitech.net/7/257/2422/01jan20071800/edocket.access.gpo.gov/2007/07-2733.htm (Federal Register, Volume 72, Number 106, June 4, 2007, Page 30803-30805).