Issue

How do we protect medical records and patient confidentiality without jeopardizing access to critical research, public health and consumer information needs?

Policy

• Minnesotans expect, and under Minnesota and federal law are currently entitled to, confidential treatment of their medical records.
• Overly restrictive proposals that limit access to medical information by health researchers, payers and providers jeopardize the quality of patient care, the choices patients have in the market and the effectiveness of our health care system.
• Health care information and databases are useful tools for purchasers, health plans and providers in improving health, evaluating quality and outcomes, and containing costs. Records-based research is vital to provide appropriate, quality, cost-effective health care.
• Employers should not be prohibited from accessing their group claims experience and loss experience information.
• Oppose “opt-in” informed consent requirements for data that is encoded or encrypted so it does not directly identify a patient.

Business Impact

Minnesota has some of the strictest health care privacy laws in the nation. Minnesota law requires that when information is released, all patient identifiers be encrypted to ensure patient confidentiality. As of January 1, 1997, providers must do the following: first, notify, in writing, all patients seeking medical care that medical records may be released for research and that the patient may object; second, obtain the patient’s authorization for the release of records for research, which does not expire, but may be revoked; and third, on request, inform subjects whose records were released and tell them how they can contact the investigators. Also, under state law, health plan companies cannot sell patient data.

“Opt-in” requires patients to provide consent each time a medical record is used for research, even if this information is encoded or encrypted and cannot identify the patient. Access to medical information that is encoded or encrypted is necessary to protect the health of Minnesotans and provide them with information necessary to make informed health care choices. Researchers use encoded or encrypted information to study patterns of the course of diseases and for comparing outcomes of various treatments. Results from these studies are vital to fostering continued improvements in health care for future generations. More and more, information is used to measure performance outcomes of doctors, clinics and hospitals to provide consumers with information about best practices and quality of care. Limiting access to encoded or encrypted information could make this information obsolete.

Optional patient participation makes statewide assessments and other research data statistically unsound. Without sufficient numbers of people participating in these studies, many become statistically invalid. A study by the Rochester Mayo Clinic also found that there are statistically significant differences in who consents to providing information, with respect to age and disease category. This severely limits research capabilities for populations most in need.

The use of “opt-in” requirements may very well violate the First Amendment. The U.S. Supreme Court let stand a 10th Circuit Court of Appeals decision that said “opt-In” violates commercial free speech rights for telephone subscriber information.

In 2003, the Minnesota Department of Health proposed a new rule on the collection of administrative billing data. This rule expanded existing statutory authority to collect information to evaluate Minnesota’s health care system. The rule was withdrawn after issues of privacy and scope of collection were raised by the Legislature.

Consumers want and demand choices in the health care market. The existing third-party marketplace has often isolated health care consumers from the decision-making process. Employers believe that we need to re-engage consumers in making sound economic and responsible choices about their health care. Essential to connecting consumers to the choices they make in health care is providing access to the information that will allow them to make responsible and informed choices. This cannot happen if information about performance outcomes, cost-effectiveness and the quality of care is not available.