IMMEDIATE AND ONGOING OPPORTUNITIES FOR PUBLIC RESPONSE: Minnesota's Health Data Collection Rule and Law

IMMEDIATE AND ONGOING OPPORTUNITIES FOR PUBLIC RESPONSE: Minnesota's Health Data Collection Rule and Law

PLEASE NOTE: In all correspondence, include the official title of the RULE (Proposed Permanent Rules Regarding Administrative Billing Data, Minnesota Rules, chapter 4653) and/or the officials title of the state LAW (Health Care Cost Containment: Minnesota Statutes 62J.301 - 62J.42)

1) CONTACT YOUR LEGISLATORS. The rule is based on a 10-year old state law. The Minnesota Legislature can choose to repeal or change the law that enabled the rule. Send or email a separate letter (or a copy of your previous letter to the judge or MDH) to your state Representative and Senator.

A letter or email to the chairs of certain committees could be sent also: Rep. Lynda Boudreau (R-Faribault), House Health and Human Services Policy Committee; Rep Fran Bradley (R-Rochester), House Health and Human Services Finance Committee; Senator Becky Lourey (D-Kerrick), Senate Health and Family Security Committee; Sen. Linda Berglin, Health, Human Services and Corrections Budget Division; Rep. Steve Smith, House Civil Law Committee; and Senator Don Betzold, Senate Judiciary Committee. Find below (#6) the contact numbers and email for all members of these committees.

For names, addresses, email, and phone numbers of YOUR legislators: call HOUSE information at 651-296-2146 and SENATE information at 651-296-0504. Or view the Minnesota legislature web page: http://www.leg.state.mn.us/ . The list of all legislators can be found here: http://www.house.leg.state.mn.us/hinfo/1108ecard.pdf (PDF)

2) CONTACT THE GOVERNOR. Governor Tim Pawlenty will be responsible for signing or vetoing new legislation to create new law, or change or repeal old law. Minnesota Statutes 62J which enables the health data collection is old law. Contact Governor Tim Pawlenty at Office of the Governor, 130 State Capitol, 75 Rev. Dr. MLK Blvd., St. Paul, MN 55155. Phone: 651-296-3391 and 1-800-657-3717. Fax: 651-296-2089. Email: tim.pawlenty@state.mn.us. Governor's Web site:www.governor.state.mn.us

3) WRITE A LETTER TO THE EDITOR. Express your thoughts, feelings and opinions about the law or the rule in a letter to your local newspaper, the Star Tribune (opinion@startribune.com) or the St. Paul Pioneer Press (letters@pioneerpress.com). 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. Note that this is not only an issue of medical and genetic privacy but of personal autonomy, personal dignity, civil liberties, professional integrity, the patient-doctor relationship, and the integrity of the entire health care system.

5) SEND CCHC YOUR FINANCIAL SUPPORT. Support CCHC's educational 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 or through our website.

6) CONTACT COMMITTEE MEMBERS. See names, phone numbers and email addresses. Click here.

NOTE OF CAUTION: Before deciding that the collection of medical information without names and addresses is acceptable, consider:

• The LAW allows the entire medical record to be obtained by the state.
• The collected information could include DNA and genetic information.
• The information may still be indentifiable though de-identified.
• Private information will become state property.
• Physicians will be tracked by name, treatment decisions, and prescriptions
• Patient data can be used to create state-endorsed treatment guidelines
• Proponents of re-identification would only need a new legislature and a short paragraph buried in some 400-page health care bill to reattach names and addresses at some point in the future.

IMPORTANT LINKS:

• RULE: http://www.comm.media.state.mn.us/bookstore/stateregister/278.pdf (PDF)
• JUDGE'S RULING
• CURRENT LAW (62J.301 - 62J.42)
• MN HEALTH DEPARTMENT web page
• MN LEGISLATURE
• MN OFFICE OF ADMINISTRATIVE HEARINGS

CONTACT INFORMATION FOR MINNESOTA LEGISLATIVE COMMITTEES