Times Testimony on Minnesota Department of Health Rule 4653 House Health and Human Services Policy Committee Chair: Rep. Lynda Boudreau

By Twila Brase RN, PHN
Citizens' Council on Health Care

Times Madam Chair and Members of the Committee,

My name is Twila Brase. I am president of the Citizens' Council on Health Care. Thank you for holding this hearing on the health department's plan to create a patient-tracking system.

Our organization has been concerned about the 1993 law that enables this data collection since we discovered it in 1995. Since the proposed rule was first announced to the public in August, 1,086 letters from all across the state were sent by the public to the department and to the judge. (See map) Almost 94% of the writers were opposed to the data collection. After looking through the letters, we wrote a report on the public's response which we released on November 21st. The report was sent to you last fall. Another copy will be provided to you at the end of this hearing.

A roster of professionals, organizations, and citizens have come today to provide you with a broad view of opposition to the patient-tracking system. Therefore, I will limit my testimony to five points:

Point number One. Health officials kept the average citizen in the dark about their plan. Although the department sent out notices to various individuals and organizations, the department buried the rulemaking process and the proposed rule in its website where even I, who was looking specifically for it, couldn't find it until I searched under the word "encounter," a word most of the public wouldn't know. Second, the department gave the rule a less than descriptive title: Proposed Permanent Rules for Administrative Billing Data. This title does not indicate that a patient-tracking system was being set up. And finally, the department did not distribute a press release on their intentions, inviting the public to comment.

Point Number Two. The enabling statute, 62J, is more intrusive than the rule. In the midst of this discussion about the rule, we do not want you to forget the statute that allows it. Although this rule requires hospitals and insurers to collect and transmit a certain, albeit long, list of data , Minnesota law allows the department to access the entire medical record, including genetic data, of any person receiving health care in this state.

Point Number Three. A government database for tracking the diagnoses and treatment decisions of patients will restrict personal autonomy. Already, according to a 1999 survey of the California Healthcare Foundation, 15% of 1000 people surveyed have taken evasive action to protect their privacy. They have falsified medical histories, used false names, paid cash though insured, asked for information to be omitted from medical records, and avoided the doctor's office altogether. This type of reaction, all by itself, will increasingly skew whatever research results the department hopes to achieve.

After the Star Tribune unveiled the patient-tracking system, people got scared. One person came to our office in great distress. Actions in the past had come back to haunt this person. Leaving my office, this person proceeded to distribute letters to every clinic, hospital, and practitioner ever visited, requesting that no data be sent to the government. Another woman called to say she'd cancelled her annual physical to keep her data out of a government file. But unfortunately, this rule will require data on these two very scared individuals to be sent where they desperately do not want it to go. So you see, before the tracking system even begins, the autonomy of these individuals has been compromised.

Government access to medical records is not supported by the public. According to a 2000 Gallup Survey, 71% of those surveyed opposed access by local and state health departments, and 92% opposed access by government agencies in general. Ninety-three percent (93%) opposed research on genetic data without consent, and 91% oppose a national medical ID number, which the department plans to collect.

The department's plan to establish "best practices" in medical treatment using patient data is another serious threat to personal autonomy. Let me lay out a possible scenario for you. Once the state establishes treatment guidelines as they intend, Minnesota's Medicaid division and/or the federal Medicare program could inform Minnesota's insurers that they will reimburse according to state treatment guidelines. The insurers could then inform doctors that insurance payment for services depends on adherence to these state-endorsed guidelines-not only for Medicaid patients, but since the State endorses them, for all patients. The end result would be government-directed medical practice. If patients think fighting an HMO is difficult, imagine fighting an HMO decision that has government backing. The entire process would inhibit the autonomy of individuals and diminish the physician's ability to treat patients as unique individuals.

Point Number Four. Medical research should not supercede the rights or dignity of individuals. The quest for research dollars and results should not be allowed to usurp the right of individuals to have a private self outside the observation of government officials and the interpretation of researchers.

Here is a hard and fast rule that we recommend legislators follow. No citizen should be forced to become a research subject in order to access health care services. This patient-tracking system breaks that rule. Furthermore, it requires citizens to choose between health care and privacy. They can have one, but they can't have both.

Finally, Point Number Five. The data collection rule, and the state law that enables it, violates the new federal medical privacy rule, better known as HIPAA. HIPAA does not allow states to require submission of data. It specifically says that disclosures without consent to public health agencies and a variety of other entities are permitted disclosures, not required disclosures. Although the State requests it, by federal law, the doctor, hospital or insurer can refuse to provide the data. By requiring these disclosures and transmission of data, the health department violates federal law.

HealthPartners, in a letter to the health department dated July 31, 2002, concurs: "[U]nder HIPAA we MAY disclose to a public health authority but are not required to do so."

The proposed patient-tracking system threatens the integrity of the entire health care system and the health of patients. It allows the state to invade the patient-doctor relationship and it denies the inherent dignity and rights of patients.