RE: Proposed Permanent Rule Regarding Administrative Billing Data, Minnesota Rules, chapter 4653.

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Find Below:

- ACTIONS TO TAKE

- POINTS OF CONCERN

- NOTE OF CAUTION

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If you are concerned about Judge Klein's approval of the health department's plan to collection individually-identifiable patient data without patient consent, there are several important steps you can take immediately:

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ACTIONS TO TAKE

2) CONTACT YOUR LEGISLATORS. The rule is based on a law that's been on the books for 10 years. The Minnesota Legislature can choose to repeal or change the law (MN Statutes 62J) that enabled the rule (Proposed Permanent Rule Regarding Administrative Billing Data, Minnesota Rules, chapter 4653). Contacting legislators in advance, before the 2003 session begins, will draw attention to your concern.

3) WRITE A LETTER TO THE EDITOR. Express your thoughts, feelings and concerns in a letter to your local newspaper, the Star Tribune ([email protected]) or the St. Paul Pioneer Press ([email protected]). Remember, legislators read the news, looking for the public's opinion on issues they may be asked to consider during session.

4) SHARE THIS INFORMATION. Share (email, post at work) this information with family, friends and colleagues. For those who say "I have nothing to hide", remind them that this is less an issue of privacy than of personal autonomy, civil liberties, and maintaining choice of health care services (see below).

5) SEND CCHC YOUR FINANCIAL SUPPORT. Support CCHC's efforts with a generous contribution. Tax-deductible corporate and individual contributions can be sent to CCHC, 1954 University Ave. W., Suite 8, St. Paul, MN 55104.

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CCHC'S POINTS OF CONCERN

- Rationing Facilitated

- Negative impact on medical care

- Rights redefined

- Citizens become research subjects

- Costs increase

- Database access subject to political pressures

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DO NOT COPY OR MAIL THESE POINTS!!! Pick a few. Use your own words!

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RATIONING FACILITATED:

* Centralization of data leads to centralization of health care. Centralization of health care leads to centralization of power.

* Information is power. State health officials will have the power to push their agenda using the data of citizens. The findings of department research can be used to shape public policy. Not having access to the same data, citizens and legislators will find it difficult to challenge department findings. Rationing strategies, including care-limiting treatment guidelines ("cookbook medicine"), could be pushed in an effort to cut the cost of care, not only for public program recipients, but also for the privately insured.

* Physician tracking can lead to rationing of care. Because the names of physicians are identified, the medical decisions of every physician are available for monitoring and assessment. In fear of being tagged as "too expensive" or "noncompliant" with HMO/government treatment guidelines, or out of fear of accusation for "health care fraud, abuse or waste", doctors may opt to ration care.

NEGATIVE IMPACT ON MEDICAL CARE:

* Inappropriate or delayed care may result. The patient-doctor relationship will be negatively impacted. Knowing that the government is collecting detailed private data, patients may delay treatment or be unwilling to divulge information critical to their diagnosis or treatment.

* Doctors become conduits of information. Because the patient's information is sent from the doctor to the insurer/hospital and then is passed on to the state health department, the rule may place doctors and patients in an adversarial relationship.

RIGHTS REDEFINED:

* Fundamentally, the state government has no right to the private medical information of law-abiding citizens.

* Privacy has been redefined to start in government offices, not clinics.

* There will no longer be a right to a private self. Detailed personal information on citizens will now be owned by the state.

* State collection of genetic information is not prohibited.

CITIZENS BECOME RESEARCH SUBJECTS:

* Citizens will become unconsenting subjects of state medical research projects.

* The health department has not proven that its involvement in research is necessary for the health of the public. Doctors and hospitals have improved health care over the years without a massive state database.

COSTS INCREASE:

* Evading surveillance will be expensive. The total cost of health care may increase as some patients choose to delay seeking necessary care until it is more expensive to treat the condition. They may also be forced to travel outside Minnesota or to pay cash rather than use their insurance to prevent the state from accessing their medical information.

DATABASE ACCESS SUBJECT TO POLITICAL PRESSURES:

* Data collection can expand beyond the current rule. The law (62J) upon which the rule is based allows state access to the ENTIRE medical record. State officials have written a more limited rule, but the department can in the future use their authority to collect all existing medical information on all patients.

* Access to private health data will be subject to politics and political persuasion. Laws and rules are not set in stone. The Commissioner of Health is allowed to change the rule in the future, and future legislatures can decide to expand access for various purposes. The requirement to encrypt could eventually be eliminated.

* The state is creating a central repository of health data, an enormous target for interested parties. Those who want patient data, including private organizations, corporations, and perhaps public agencies (Department of Transportation/Department of Children, Families, and Learning/Department of Public Safety come to mind) may come to the legislature to plead their case for obtaining access so they too can contribute to the 'public good'.

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NOTE OF CAUTION

Before deciding that the data collection WITHOUT names and identifying information might be acceptable, consider that proponents of identification would only need a two-line statement in some 400-page health care bill to add collection of names and identifying information in the future. Allowing the data collection without patient consent would make the state's database perpetually vulnerable to this nearly imperceptible change.

Thank you for your interest and efforts.

Twila Brase RN

President, CCHC

651-646-8935

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A free-market resource for designing the future of health care

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Citizens' Council on Health Care

1954 University Ave.W., Suite 8

St. Paul, MN 55104

651-646-8935 phone

651-646-0100 fax

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Thank you.