Healthcare Privacy Update: Critical news today

Did you know that federal agencies are in the midst of deciding who will own and control our personal health information? Under a new proposal, a federal agency would be empowered to establish health privacy rights and how our private healthcare information is disclosed and used. Their proposed new national data collection entity would “nationalize ownership and control of private patient data,” said Twila Brase, RN, PHN, president of Citizens’ Council on Health Care.

The just-released issue of Health Freedom Watch from the Institute For Health Freedom reports:

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)....[T]he 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.

[Junkfood Science readers will remember the significant goals and interests behind the AHRQ.]

In a letter to AHRQ, the Citizens’ Council on Health Care wrote that the proposed 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.”

Examining the proposed NHDSE, they found that it would eliminate individual privacy, consent and data ownership rights; and abolish the current state medical privacy laws that protect patient privacy, while eliminating the ability of state legislators to enact future medical privacy laws. Worrisomely, it authorizes secondary uses of patient data unrelated to the direct care of patients and expands government access to private medical information. The CCHC review concluded this entity would:

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.

According to the proposed mission statement of the NHDSE, it would facilitate or enable:

• Surveillance and outside monitoring of all patients and doctors

• Patient and doctor profiling

• Health care rationing – use of patient data to build so-called “evidence-based” and statistics-based rationale for the purpose of denying medical services and controlling the practice of medicine.

• Expanded government access to private patient data

• Subjection of patients to medical, genetic, and other research projects without consent

The CCHC itemized seven major concerns, the first of which was that the public has not been informed about any of this and the AHRQ has kept their efforts virtually secret from the public, while claiming to be gathering public opinions on this initiative. A search of their website, (as of last night) finds nothing that even mentions this proposal or request for public comment.

The CCHC finally found it mentioned on the Federal Register, which asks for RFPs (requests for proposals) from interested stakeholders in the formation of this public-private organization. RFPs should be emailed to steward@ahrq.hhs.gov or mailed to P. Jon White, MD, Health IT Director, Agency for Healthcare Research and Quality, 540 Gaither Road, Rockville, MD 20850. The deadline is this Friday, July 27th!

Through this we learn that it is part of the government’s AHRQ’s health IT initiative to create a “health information infrastructure” and foster “many conversations among organizations interested in collaboration to exchange clinical data.” The foundation and private partners partnering with the AHRQ and funding this Health IT initiative include an assortment of IT interests, managed healthcare interests (such as Kaiser Family Foundation and the National Institute for Health Care Management), RAND Corporation and, of course, Robert Wood Johnson Foundation. The AHRQ health IT initiative included $166 million in grants to begin development of electronic health databases in 100 healthcare provider settings and hospitals across the country.

Given the enormous impact this issue will have for 300 million Americans, isn’t it interesting that the media has virtually ignored it? Healthcare IT News, an exception, wrote of a workshop held on July 11th among members of the government’s Office of IT Adoption. The director, Karen Bell, M.D., said: “There’s no question that the secondary use of data is a big one....We have a unique opportunity to work on the issue before it becomes front and center in consumers' minds.” Senior Editor, Diana Manos reported:

[Charles Safran, MD, Harvard Medical School] said the secondary use of data is widespread – “more than we thought.”... According to Safran, policy has so far “ignored the 800 pound gorilla in the room,” which is the selling of healthcare data as part of commercial gain. “The public is woefully unaware to what is happening to their data,” Safran said....

Nancy Davenport-Ennis [co-chair of the workgroup] said the group should explore how to regulate a violation of stewardship over the data, how to protect consumers and how to provide incentives to consumers who make lifestyle changes to improve their health based on information gained from the data.

Before this issue becomes front and center in consumers’ minds.... It appears it will be up to caring healthcare professionals and private citizens to expose this back room dealing. Remaining quiet and complacent will come at enormous costs. When the government, in the pockets of mammoth special interests, has control over our most private health and lifestyle information, our healthcare access, and the care doctors will be obligated to provide under ‘pay for performance,’ what choices will we have but to do what they say?

© 2007 Sandy Szwarc