Protecting Privacy To Improve Health Care

PROLOGUE: Irish author George Bernard Shaw once observed during a speech in New York that Americans have “no sense of privacy. [They] do not know what it means. There is no such thing in the country.” Indeed, in the wake of Kenneth Starr's referral to Congress, Shaw's words, spoken in 1933, seem perceptive, if not downright prescient. Shaw's cultural acumen notwithstanding, the health care arena presents a decidedly different picture of how Americans feel about privacy. Recent media reports abound with concerns about potential abuses of private medical information by government, employers, and insurance companies. The dilemma takes the following form: Although Americans seem to have legitimate concerns about the motives and possible actions of the stewards of their medical information, many in the medical and policy establishments fear that overzealous protections could pose serious obstacles to the improvement of medical care. Taking a somewhat unconventional stance, Janlori Goldman does not view this matter as an “either/or” proposition. In this paper she reviews the issues surrounding medical privacy and makes the case that legislation is required not only to ensure privacy, but to enhance the usefulness of information to researchers, physicians, and public health officials as well. Goldman, the founder and director of the Health Privacy Project at Georgetown University's Institute for Health Care Research and Policy, is a highly visible participant in the debates over confidentiality of medical records. She is often quoted by the popular press on these matters and has testified before Congress on a number of occasions. She earned her law degree from Hofstra University School of Law. ABSTRACT: No comprehensive federal law now protects the privacy of people's medical records. The Health Insurance Portability and Accountability Act of 1996 mandates that if Congress fails to enact such legislation by August 1999, the secretary of health and human services must promulgate regulations. This paper argues that health privacy legislation is necessary both to improve patient care and to enhance the reliability of the health information used for research and public health initiatives. Within this framework I review pending federal health privacy legislation and make recommendations for moving forward.