Testimony of Twila Brase, R.N. President, Citizens' Council on Health Care before the Minnesota House Health and Human Services Committee

An Informational Hearing on Patient Consent and Medical Privacy

Dear Mr. Chair and Members of the Committee: Citizens and most legislators are not aware of the fact that for almost a decade Minnesota government officials have had access to their individually-identifiable medical records without their consent. As a result of health care reform initiatives enacted in 1992, the Minnesota Health Data Institute was created as a data collection contract between health plans, employers, and the Minnesota Department of Health. Since that time, data has traveled relatively uninhibited between the Institute's large consortium of health plans and employer groups and the Health Department.

In addition, in 1992, health officials were given permission to access immunization data without patient consent and they created community-based registries. When in 1997, the House voted to add parent and patient consent to the collection of immunization data, and the Senate voted to add parent and patient consent to a bill that would both link the community registries centrally, and in addition, add parent and patient consent to a registry of broadly defined birth defective children, public health officials urged that the bill be pulled rather than passed--both to prevent a precedent of patient consent from becoming law, and to keep the community registries intact. So they killed the bill and it never made it out of conference committee.

With almost a decade of access behind them, government officials are naturally resistant to giving it up. Loss of jobs and power are at issue. Unfortunately, public officials assume a role of overseer that citizens have not given them, and a role, that clearly steps on the citizens' Fourth Amendment rights against unreasonable search and seizure. If that were not enough, I would like you to consider the impact of government access to medical records on the quality, accessibility and cost of health care.

In writing the new federal regulation to protect patient privacy--which is the antithesis of what it actually does--the Secretary admitted that without patient trust in confidentiality, citizens will not go to see their doctors on a timely manner and in fact may avoid health care altogether. The California Healthcare Foundation released the results of a survey in 1999 that found found 15% of 1000 Americans--150 of them--already use evasive actions to protect their own privacy in a system that refuses to honor their privacy and patient rights. They use a false name, they pay cash though insured, they falsify their medical history questionnaire, they use a variety of doctors rather than one, and they delay or avoid care.

This is not good news for researchers who want accurate data from which to write studies and make recommendations for care. Such patient behaviors and elusive techniques will only skew the data and the results of research.

It is the responsibility of state legislators to protect the rights of citizens. You should not look upon the new federal privacy regulation to protect data once it arrives within a government institution. In, fact, the regulation states, "we do not have the statutory authority to regulate law enforcement and oversight agencies' re-use and re-disclosure of protected health information." So once the government agencies have it, the regulation is powerless to protect patients.

However, there is an opportunity here. Because the regulation does not apply where there are stricter state laws, state legislators can make a real difference by enacting stricter laws against unconsented medical record access by government officials and medical and public policy researchers.

Clearly there are many--you will hear from them today--that claim that privacy begins in their own cubicles and not in the doctor's office. Denying patients their ethical and constitutional right to privacy will remove the critical ingredient of trust from the health care system, limit accessibility to care, and add to the cost of health care as patients try their best to elude the data collectors that have come to believe that the patient's data is not the patients, but their own.

It is not the duty of patients to work for public health officials, researchers, or the health care system. It is not the duty of patients to work for "society." The health care system was created to work for ill and injured patients. Without patients, there would be no need for the health care sytem, so when the system ceases to work for patients, but demands that vulnerable, desperately ill patients work for it and the government in exchange for health care services, patients and the system are in trouble. Patients should not have to choose between care and confidentiality. And patient should not be required to give up their constitutional rights to receive care.

Thank you.