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Opinion

Senate health care bill: the five paragraphs you must read

Buried in the Senate's 2,074-page health reform bill are provisions that undermine your health freedom and privacy.

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Bottom line: Americans should be able to contract privately with the insurance companies of their choice. Patients should be able to decide whether to have electronic or paper medical records, and not have the government require electronic records, which are then included in a nationally linked database.

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3. Real-time health and financial data

Bill text: "Sec. 1104. Administrative Simplification…. (4) Requirements for Financial and Administrative Transactions. – (A) In General. – The standards and associated operating rules adopted by the Secretary shall – (i) to the extent feasible and appropriate, enable determination of an individual's eligibility and financial responsibility for specific services prior to or at the point of care.... (i) Eligibility for a Health Plan and Health Claims Status. – The set of operating rules for eligibility for a health plan and health claim status transactions shall be adopted not later than July 1, 2011, in a manner ensuring that such operating rules are effective not later than January 1, 2013, and may allow for the use of a machine readable identification card."

Translation: Administrative Simplification rules are being expanded to gather real-time financial and health data on individuals through a tracking ID, possibly a "machine readable" ID card (electronic device).

Bottom line: Moving forward with real-time data collection without an ethical patient consent provision means everyone loses their health-privacy rights. Congress needs to enact strong patient consent provisions for all health data, especially data collected "real-time."

4. Health data network

Bill text: "Sec. 6301. Patient-Centered Outcomes Research.… (f) Building Data for Research. – The Secretary shall provide for the coordination of relevant Federal health 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 sources, including electronic health records."

Translation: Your personal health information may soon be studied by government scientists. Washington is creating a new research center that plans to use patients' electronic health records for conducting research and creating disease registries. The data network is comprehensive and includes use of electronic health records.

Bottom line: Federal funds should not be used to collect data electronically and conduct research on patients' personal health information without their consent.

5. Personal health information

Bill text: "Sec. 6301. Patient-Centered Outcomes Research…. (B) Use of Data. – The [Patient-Centered Outcomes Research] Institute shall only use data provided to the Institute under subparagraph (A) in accordance with laws and regulations governing the release and use of such data, including applicable confidentiality and privacy standards."

Translation: Think your health privacy is protected? It's not. This language refers to "applicable confidentiality and privacy standards," but HIPAA's so-called privacy law permits individuals' personal health information to be exchanged – for many broad purposes – without patients' consent (See 45 CFR Subtitle A, Subpart E – Privacy of Individually Identifiable Health Information; section 164.502(a)(1)(ii) "Permitted uses and disclosures").

Bottom line: Trust is a must for ensuring quality healthcare. Thus, as stated above, Congress needs to pass a strong, ethical patient consent law that ensures patients have control over the flow of their personal health information.

What about the consent of the governed?

All told, the national mandatory health-insurance bill puts the federal government in charge of individuals' insurance choices and data privacy. This philosophy of governing is the opposite of America's founding principle: consent of the governed.

Without health freedom and privacy rights, Congress is opening the door for many wrongs to be committed – all in the name of covering the uninsured.

Sue Blevins is president of the Institute for Health Freedom in Washington. Robin Kaigh is an attorney and medical-privacy advocate in New York.

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