A Privacy Debate
Cardinale, Val, Drug Topics
While Congress continues to put off the enactment of federal legislation on health-care privacy and confidentiality and as state legislatures weigh more than 250 bills on the subject, the drumbeat calling for the protection of a patient's right to privacy and confidentiality is rumbling across the land.
It could be heard, loud and clear, at the National Wholesale Druggists' Association's annual meeting late last month in Washington, D.C. At a panel session moderated by Phillip Gerbino of the Philadelphia College of Pharmacy, University of the Sciences, representatives of industry, pharmacy, consumer, and academic organizations debated the issue passionately but, for the most part, civilly.
"Consumers have known for years that everybody but them can get copies of their medical records-or see things about them," said Charles Inlander, president of the People's Medical Society. "That's very offensive to most consumers."
While consumers are concerned about privacy, they realize that there may be times when information needs to be passed along to someone else, Inlander added. What they want is to be notified when relevant information should be passed along; they want to give permission for that information to be passed along; and they want to be able to rid the record of misinformation or mistakes when they pop up, he said.
Janlori Goldman of Georgetown University's Institute for Health Care Research & Policy agreed that "people need to be informed and to be active participants in their own health careand that's what we're missing right now." She said that lack of privacy has wide ramifications. "Anxiety about the lack of privacy has led people to engage in a series of privacy-protective behaviors. They withhold information; they give inaccurate information; they ask doctors to put inaccurate diagnoses on claim forms. Doctors are starting to keep separate records-one for the office, one to send on. And, in the worst scenario, people are afraid to seek care at all." Down the line, the reliability and integrity of research are compromised by inaccurate or incomplete data.
"Having access to health-care data and working with coalitions are extremely important to us," said Preston Crabill, director of health-care plans for General Motors Corp., which has 1.5 million enrollees in its health plans. He agreed that maintaining confidentiality is "of utmost importance," but it's also "extremely important for major payers to continue to have access to information so that we can work collaboratively within communities to improve the quality of care delivered for our enrollees within those communities." Robert Epstein, chief medical officer and senior v.p. of medical affairs at Merck-Medco Managed Care, added that there may be "clinical benefits that can be derived from passing certain information to health-care professionals at the point of prescribing." He recommended that those involved in setting public policy should investigate "some of the types of information that need to be shared, set some ground rules, and suggest where informed consent is necessary."
As pharmacy moves from a productoriented profession to an information profession, clearly pharmacists need information about the patient, commented Philip Burgess, national director of pharmacy operations at Walgreen Co. "One of the things that ties the pharmacist's hands today is not having diagnosis, test results, and other pertinent information. …