ACTION: Judge asks for public comments (letters) on proposed CHANGES to the rule:

At the hearing on the proposed MN health data collection rule, the judge asked the Minnesota Department of Health (MDH) to provide proposed changes to the rule as soon as possible so that citizens would have an opportunity to comment on the proposed changes. The changes were published October 15th. CCHC recently distributed a press release which stated that the proposed changes do NOT address the concerns of the public as heard at the hearing or written in previous comments to MDH. A list of CCHC concerns and a SAMPLE LETTER can be found below.

DEADLINE: Thursday, October 24, 2002 at 4:30 p.m.

EMAIL ADDRESS: allan.klein@state.mn.us

STREET ADDRESS:

Judge Allan Klein

Office of Administrative Hearings

100 Washington Square, Ste. 1700

Minneapolis, MN 55401-2138

JUDGE'S FAX: 612-349-2665

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SAMPLE LETTER (Please add or use your own words): _________________________________________________

Judge Allan Klein

Office of Administrative Hearings

100 Washington Square, Ste. 1700

Minneapolis, MN 55401-2138

RE: MDH's proposed changes to the Proposed Permanent Rules for Administrative Billing Data, Minnesota Rules, chapter 4653

Dear Judge Klein,

The health department's proposed changes to the proposed health data collection rule do not address my concerns.

* The collection of private, personal medical information by the state will still occur without informed, voluntary and written consent of citizens.

* The amount and type of information to be collected has not changed, and is still identifiable to the Minnesota Department of Health.

* A separate department computer for storing names and addresses does not assure patient or citizen privacy. The State still has the information and the ability to re-identify the data. In addition, there is no assurance that the information without name and address is deidentified or not identifiable.

* The Commissioner of Health retains the authority to add new data elements to the rule if in his/her own determination they are required to comply with new or revised state or federal law. This could include genetic and lifestyle data.

* The health department's proposal to publish annual summary reports on use of the data, and activities of the department, does not compensate for loss of patient privacy and constitutional rights.

Please take my concerns into account as you consider your ruling on this important matter. Thank you.

Sincerely,

NAME

ADDRESS

CITY, STATE, ZIP

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CCHC CONCERNS ABOUT PROPOSED CHANGES:

* The Commissioner retains authority to add new data elements not listed in the rule, if in his or her determination they are needed to comply with new or revised state or federal law. Data element requirements could include genetic and lifestyle data.

* Requiring review by the data use committee for research using citizen health data is relatively meaningless given that the data use committee has no authority in the matter. It can only make recommendations. The Commissioner retains sole authority to allow or deny access to data for research project.

* Despite the public's outrage over the proposed rule, there is still only one consumer on the data use committee, and that consumer is appointed by the Commissioner.

* In what appears to be a political move, health officials added "policy development information for the Minnesota state legislature" as an internal (health department) use of patient data.

* When making reports to the public on variations in cost, quality and outcomes, the addition of "appropriate risk adjustment methodologies" if a provider or group purchaser is identified assumes that there is only one possible calculation methodology. Such reporting may lead to incorrect interpretations of medical practice and health care utilization, and possibly to costly litigation.

* Although the department added annual reports on use of patient data, and activities of health department surrounding the data, there is no requirement for broad distribution of the annual data use reports, and only summary information is included.

* There is no annual reporting of the taxpayer costs associated with maintaining the system, collecting the data, training staff, conducting research, conducting audits, updating security, and litigation and legal services.

* The use of a separate computer for storing name and street address, a computer that is disconnected from all networks including the Internet, does not eliminate the concern about state access to individually-identifiable information. The state is still collecting the personal identification and still maintains the identification and the codes for reidentification of the data. In addition, personal data can often be identifiable and re-identified even without names and addresses.

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Proposed Rule:

NOTE: If you do not wish to receive this email,contact CCHC to remove your name from the list.

Thank you.

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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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NOTE: If you do not wish to receive this email, contact CCHC to remove your name from the list.

Thank you.