Why is Privacy Important to Freedom?

Commentary from Twila Brase, President CCHF


December 19, 2012


Obamacare uses data for control. The Obamacare health insurance exchange is an enormous federal data sharing system. The "HUB" I discussed last week is central to data-sharing. HHS will not only peek into private data. It will prowl. It will create "risk scores" on individuals. Consider how government surveillance has been used in history. In her 2011 essay, "State Terror: Stalin 1930 - 1938," Michele Roberts writes:
"The total control of patient data allows HHS to control the health care of the mass population simply by dictating to physicians only the services that HHS wants patients to receive....The population has not have access to the government directives coming from outside the exam room... The people believed Stalin when he told them that they were better off than they had been five years earlier, even though they were now starving, and perhaps living in a hallway under a staircase. The people were told that their lives would improve, and when their lives did not improve, they believed that the designated scapegoats were truly guilty of the charges leveled against them."
Health surveillance is coming. As a result of the 2009 Recovery Act's EHR requirements and $27 billion to build a national health data system, 50% of U.S. providers use computerized electronic health records (EHRs). With apologies to Ms. Roberts, I've reworked her comments to describe our possible future under the data system:
The total control of patient data allows HHS to control the thoughts of the mass population simply by telling them only what HHS wants them to know...The population does not have access to patient medical records as a result of the HIPAA privacy rule...The people believe HHS when it tells them that they were better off than they were five years earlier, even though they are now forced into managed care, denied medical treatment, and perhaps living a poorer quality of life. The people are told that their health care will improve, and when it does not improve, they believe that the designated scapegoats (doctors and hospitals) are truly guilty of the charges leveled against them by HHS and its health plans.
All patients become involuntary research subjects. Obamacare's research division, the Patient-Centered Outcomes Research Institute (PCORI), has a 21-member unelected Board of Governors. PCORI must conduct clinical effectiveness research (CER) which will evaluate and compare "health outcomes and the clinical effectiveness, risks, and benefit of any...strategies or items being used in the treatment, management, and diagnosis of, or prevention of illness or injury in, individuals." The final regulation for funding PCORI was recently issued. It includes a $2 fee on insurers "multiplied by the average number of lives covered under the policy." PCORI just announced 25 awards totaling $40.7 million over three years.
Medical records will be networked. HHS must provide PCORI with data from government programs as well as federal "data networks." In addition, the Institute "may also request and obtain data from Federal, State, or private entities, including data from clinical databases and registries." (S
ec. 6301(d)(3)) 
"The Secretary shall provide for the coordination of relevant Federal heatlh programs to build data capacity for comparative clinical effectiveness research, including the development and use of clinical registries and health outcomes research data networks, in order to develop and maintain a comprehensive, interoperable data network to collect, link, and analyze data on outcomes and effectiveness from multiple sourcse, including electronic health records."
Will patient care be impacted? Yes. The HHS Office of Communication and Knowledge Transfer -- Orwell would love the name -- will "promote the timely incorporation of research findings...into clinical practices..." Thus, HHS-approved treatment directives will be placed onto doctor's computer screens. HHS is also allowed to use PCORI findings to determine coverage and reimbursement (e.g. "essential health benefits"). And HHS will train PCORI researchers "in the methods used to conduct such research." Finally, the IPAB rationing board (see today's News to Know) could use PCORI research findings in payment decisions.
Billions will be spent. Cash-strapped Medicare with its 47.5 million enrollees will give PCORI $1 per Medicare enrollee in 2013, then $2 per enrollee from 2014 - 2019. Likewise, insurers and self-funded plans will pay the same amount per enrollee. Federal taxpayers will chip in $510 million. This is in addition to the $1.1 billion for CER in the 2009 Recovery Act ("stimulus"). Data, data everywhere. HHS is spending $15 billion to create a virtual data center. Under Obamacare, "The Centers for Medicare and Medicaid will have to manage and analyze double the volume of Medicare data and triple the terabytes of Medicaid data."
States can stop HHS. HIPAA gives States authority to enact real patient privacy laws. State legislators should begin right now. Talk to your state legislators about strengthening state privacy laws and patient control, for instance, by requiring patient consent requirements for online sharing and linking of medical records data. 
YOU can slow Obamacare. There are four proposed federal rules to which you can make a one-statement comment. We need to give them sufficient evidence that the public is not happy with a 30-day comment period over the holidays of 700 pages of "find out once they're passed" regulations. 
It's simple. CLICK HERE. Copy and paste as directed. Act now. The first deadline is Friday, December 21.
Wishing you the warmest Christmas greetings,
Twila Brase RN, PHN
President, CCHF
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