One in six has altered her behavior to avoid the misuse of her information, including avoiding needed medical care. We have reached a point where concerns over privacy have broken the bonds of trust between doctor and patient. Not only does this harm medical research, it literally impedes physicians' ability to make informed medical decisions. When patients feel uncomfortable about revealing their health status to their own doctors, health care suffers. The Institute of Medicine recently reported that medical mistakes are a more prevalent cause of death than AIDS, breast cancer, or highway accidents.
Patient data does have an appropriate use in ensuring quality care.
New research methodologies utilize anonymized patient outcome data to reduce costs and elevate the quality of care. But differing state standards hinder the free flow of information. Better, more efficient ways of treating patients remain untested because of difficulties in sharing data on clinical trials between different states. Our task is to simultaneously protect the confidentiality individual of medical records while enabling the appropriate use of health data that is delinked from the patient's name. Comprehensive federal legislation is necessary to set a uniform national standard and replace fractured, piecemeal state requirements.