Federal Proposal Threatens Patient Privacy and Patient Consent Rights

CCHC Sends Letter Opposing National Health Data Stewardship Entity; Calls on Federal Agency to Better Inform the Public and Extend July 27th Public Comment Deadline.

St. Paul/Minneapolis — In a letter sent today to the federal government, the Citizens' Council on Health Care (CCHC) stated their opposition to the “National Health Data Stewardship Entity” proposed by an agency of the Department of Health and Human Services.

CCHC charged the Agency for Healthcare Research and Quality (AHRQ) with poorly informing the public and called on it to:

  • Extend deadline for public comments beyond this Friday, July 27th.
  • Better inform the public of the agency’s request for public input.
  • Fully support individual privacy, consent and data ownership rights in any future health data proposals.

“The federal government is considering a plan to centralize control over the private medical records of 300 million Americans. A group of bureaucrats, corporate executives and political appointees would set the rules for how all private data is disclosed and used. Privacy and consent rights don't appear to be part of the discussion,” said Twila Brase, president of CCHC.

“The public needs more time to learn about the proposal and respond,” she added.

The CCHC letter to AHRQ includes the following Summary Statement:

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 and research, potential embarrassment, fear in and outside the doctor’s office, privacy violations, genetic discrimination, breaches in the confidential patient-doctor relationship, profiling and surveillance, outside controls on the practice of medicine, and health care rationing. The proposed NHDSE would:

  • Nationalize ownership and control of private patient data.
  • Eliminate the exercise of individual privacy, consent, and data ownership rights.
  • Abolish current state medical privacy laws that actually protect patient privacy.
  • Eliminate the power of state legislators to enact future medical privacy laws.
  • Authorize a multitude of secondary uses of data unrelated to the direct care of patients.
  • Expand government access to private medical data.
  • Place control over access to and use of confidential patient medical records data in the hands of unelected and unaccountable bureaucrats, corporate executives, and political appointees in a centralized bureaucracy far from the people whose privacy is violated—and whose access to medical care would be threatened by statistics-based health care rationing decisions.

The Citizens' Council on Health Care does not support the proposed National Health Data Stewardship Entity, requests an extended deadline for public comments and improved public notice, and calls into question the legal standing of the RFI. CCHC also calls on the AHRQ to fully support individual privacy, consent and data ownership rights in any future health data proposals.

The CCHC letter in its entirety to can be found online at:

The NHDSE proposal can be found in the Federal Register at:

Media Contact:

Twila Brase, President and Co-founder
Office: 651-646-8935