* Require that patient consent be obtained for access to, disclosure of, and use of patient medical data. All uses, and an explanation of uses, would be detailed in the consent. For uses unrelated to the provision of health care services (eg. marketing), patients would have a right to withhold specific consent. Along with other informational materials, prospective enrollees must be given a copy of the consent form.

* Require penalties for improper disclosure and use of patient data without patient consent.

* Acknowledge the patient's right to commence legal action against those violating patient consent agreements.

* Permit researcher access to anonymized data for medical research if patient consent is not obtained, or access to fully identifiable data if patient consent is obtained.

* Require that specific patient consent or a search warrant approved by a judge be required for government agency or law enforcement access to patient data.

* Require that the U.S. Department of Health and Human Services could access patient data for enforcement purposes only after a complaint has been made and only with a search warrant approved by a judge.

* Provide patients with the right to access, view, copy, and provide separate amendments to their medical records, unless a court order is obtained to prevent a reasonable likelihood of harm to the patient or others.

© Citizens' Council on Health Care, March 30, 2001