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Table 1. Governance Functions, Objectives and Activities.

Table 1, #2 – Establish technical requirements to assure policy and technical interoperability.
The second bullet under “activities” refers to the need to establish a transition process as technical requirements change. Changes in technical requirements are not an easy undertaking, regardless of the size, and what is often seen as a minor tweak or small change may actually take significant platform changes which are timely and expensive. We ask that the Committee recognize the extent of time and resources that may be needed to technical requirement changes and seek vendor input when making those timeframe recommendations.

Table 1, #4 – Oversight of the governance mechanism.
We ask that the Committee ensure that “governance” and “oversight” remain separate functions to avoid conflict of interest and insure that the lines between the two are not blurred. Governance and oversight are frequently merged together, yet have very different definitions and functions.

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The proposed NHIN apparently can’t improve patient care, uphold patient privacy rights, or ensure patient trust but to use the system to gather data, analyze patients, and control the practice of medicine by conducting surveillance on doctors and patients (and implementing payment reform according to physician compliance reports created through electronic NHIN tracking).

True governance of all sharing of private patient medical records must reside with the patients who are the subjects of the records. However, the HIPAA “privacy rule,” which opened up the medical record to more than 2.2 million entities the word “consent” can’t even be found in the Governance Workgroup’s October 18, 2010 report on Preliminary Recommendations.

True patient privacy means that medical data is not shared with anyone or placed on the NHIN unless and until the patients give consent. Yet the October 18, 2010 report on Preliminary Recommendations makes it clear that “Security” of the stored and shared data is the goal, not Privacy. Once the patient’s data has been taken without patient consent, “privacy” cannot be protected. Privacy will have already been violated.

The government is proposing to create a national health surveillance system that violates the very tenets of the confidential practice of medicine and the critical patient-doctor relationship. Trust and government surveillance are incompatible. There is nothing in the NHIN, the proposed recommendations report, or the proposed governance structure that will establish or ensure trust.

The second of the two “High-level NW-HIN governance objectives” is to “Assure interoperability while protecting Innovation.” If Government is going to define “quality” and doctors must comply or risk reduced pay, threat of de-licensure, or government charges of “fraud, waste, and abuse,” which may end in government-imposed imprisonment, how will that lead to individualized patient care and medical innovation?

The question to the public should not be about what kind or level of governance is necessary for the proposed HNIN. The real question should be why the government and the administration are forcing all patients and doctors to participate in an unconstitutional national health surveillance system that will eliminate patient privacy, patient consent, patient trust, and the individualized medical treatment necessary for good patient care.

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The purpose of this policy is without merit, appears to be data mining with unexpressed intentions or will lead to them.

I do not agree with this pending policy making action. I do not need more government intervention into my private life style without my expressed consent. Therefore, this pending policy action should be stopped and the commission should be decommissioned immediately.

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What will actually suffer if NHIN is adopted is that patient privacy will necessarily be destroyed. True patient privacy means that medical data is not shared with anyone or placed on the NHIN unless and until the patients give consent. Yet the October 18, 2010 report on Preliminary Recommendations makes it clear that “security” of the stored and shared data is the goal, not privacy. Once the patient’s data has been taken without patient consent, “privacy” cannot be protected. Privacy will have already been violated.

Another aspect of patient care and patient rights that will be destroyed is the right of the patient to obtain the type of care the patient wants. The second of two “High-level NW-HIN governance objectives” is to “Assure interoperabilty while protecting Innovation.” However, the proposed NHIN and its plan to conduct surveillance and implement control over patients and doctors are anathema to individualized patient care and medical innovation. The only purpose for such a database and to enforce compliance by patients and doctors is to force patients and doctors to use certain protocols rather than others. This obvously will tend to suppress the use of alternative therepies or new therepies that have not been approved by the government.

The proposed NHIN is not meant to improve patient care, uphold patient privacy rights, or ensure patient trust. Proponents plan to use the system to gather data, analyze patients and doctors, and control the practice of medicine by conducting surveillance on doctors and patients (and implementing payment reform according to physician compliance reports created through electronic NHIN tracking). All of this really doesn’t accomplish any goal of providing better medical care. It creates a new, expensive government office. Any patient’s health care dollars can be better spend than this.

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A patient’s privacy and any data collected from a patient should not be allowed to be stored, saved or used without a patient’s consent.

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