The confirmation on June 6, 2013 by the US National Security Agency (NSA) that it has been secretly collecting on-line data that originated overseas from non-U.S. citizens, has re-ignited an old controversy about the growth of domestic surveillance by the U. S. Federal Government.[1] This controversy has been exacerbated by the realization that the NSA has also been gathering telephone records for the past six - seven years. The NSA claims that these activities were done in the name of National defense. The latter initiative, known as PRISM,[2] has stirred the pot at a time when healthcare experts were again discussing the need for a national identity card, known as a Unique Health Identifier (UHI).
Civil liberty advocates at one end of the spectrum, and libertarian conservatives at the other end, vigorously assail the “PRISM” policies that began under the George W. Bush Administration (2000-2008), and now, it is known, have been carried on and expanded under the Obama Administration. Critics view these surveillance activities as an encroachment on civil liberties, threats to our privacy, and often refer to this facet of the US Government as “Big Brother.”
I had hoped to blog about the recent resurgence of interest in the UHI and make an impassioned plea for its adoption and implementation. There are compelling reasons why a UHI is the “right answer” to very real, pressing healthcare delivery concerns. But the recent controversy has stopped me in mid-stride. The debate over the UHI, coming as it does in the aftermath of PRISM, has cast a shadow over a good idea and viable solution. I fear the proverbial “baby” will be thrown out with the bath water --and, that is a shame.
Opponents of the UHI sank it during the Clinton Administration, claiming it was an invasion of privacy. Originally mandated by the 1996 Health Insurance Portability and Accountability Act (HIPAA), the UHI would have been the “first comprehensive national identification system” since 1935 when the Social Security number was introduced. The concept of the UHI was to create a national database that would “track every citizen’s medical history from cradle to grave.” [3] The concept of a “cradle to grave” medical record is still the ideal for military personnel and Veterans, as seen in the policies and programs promulgated by the Department of Veterans Affairs and the U.S. Department of Defense including: the VA’s Virtual Lifetime Electronic Record (VLER)[4] and the VA/DoD joint, integrated Electronic Health Record (iEHR) that has yet to see the light of day.
The most renowned defender of the UHI was William R. Braithwaite, M.D., Ph.D., a Senior Advisor of Health Information Policy for the U.S. Department of Health and Human Services, who presented testimony on its behalf to a House hearing in September, 1998. Dr. Braithwaite said in his prepared remarks that the UHI would create greater privacy for the ordinary citizen whose paper-based records are “open” for all to see. Dr. Braithwaite contended that a “health record using only a unique health identifier, would display no identifying information and therefore would be anonymous.” [5]
A myriad of proponents advocate UHI and include leading physicians such as Dr. Braithwaite and hospital systems. Experts say it would solve some of the most pressing problems in modern healthcare delivery, including lack of interoperability, difficulty in identification of and matching of patients with their healthcare records, and medical identity theft, billing and data entry mistakes, among others. In the absence of a UHI, conglomerates are trying to address the problem with proprietary, piece-meal solutions, which will not work and will only enrich the owners of such enterprises.
Bill Gates in an address to Indian government officials and technology executives in July, 2009, criticized the U.S. Government for its “unwillingness” to adopt a national identity card and for not allowing the healthcare industry to centralize data-keeping on individuals. “It has always come back to the idea that ‘The computer knows too much about you,’ he said.” The U.S. “got off to a bad start” when it comes to using computers to keep data about its citizens…. Doctors are not allowed to share records about an individual patient, and virtual doctor visits are banned, … which “wastes a lot of money…The United States ‘had better come up with a better model’ for health care” Gates said.
Gates quickly moved into the healthcare IT industry with a HealthVault [6] offering, which is now a joint initiative between Microsoft and Microsoft Healthcare Partners. But, I cannot help but wonder if his position regarding the UHI has changed, given Microsoft’s alleged involvement in PRISM. I hope not.
By Judy Fincher
[1] http://www.nytimes.com/2013/06/07/us/nsa-verizon-calls.html?ref=technology
[2] http://en.wikipedia.org/wiki/PRISM_(surveillance_program)
[3] http://www.nytimes.com/1998/07/20/us/health-identifier-for-all-americans-runs-into-hurdles.html
[4] http://www.va.gov/vler/. “The Virtual Lifetime Electronic Record (VLER) enables the Department of Veterans Affairs (VA) and its partners to proactively provide the full continuum of services and benefits to Veterans through Veteran-centric processes made possible by effective, efficient, and secure standards-based information sharing. VLER is a multi-faceted business and technology initiative that includes a portfolio of health, benefits, personnel, and administrative information sharing capabilities. It provides Veterans, Service members, their families, care-givers, and service providers with a single source of information for health and benefits needs in a way that is secure and authorized by the Veteran or Service member.”