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PRESS RELEASE: Fund-Raisers Seek Patient Health Data Privacy waivers in use at Northwestern, Rush By Sarah A. Klein November 13, 2004 The biggest physician group at Northwestern Memorial Hospital is asking patients to waive new federal privacy rights so their names and medical diagnoses can be passed on to fund-raisers. The aim is to identify patients interested in specific diseases who would likely support research initiatives. Raising money by targeting patients with a given illness was made more difficult by privacy provisions of the Health Insurance Portability and Accountability Act, which went into effect in April 2003. Fund-raisers can still get names, addresses and phone numbers of patients, and when they received care. But they can't find out, as they once did, which patients suffer from cancer, Parkinson's disease or others ailments that might predispose them to support research, or say, open a wing dedicated to that condition. Does that really happen? Well, Northwestern University's medical school, two of its institutes and one of the hospital's two main towers all bear the name Feinberg. Stricken in 1987, Reuben Feinberg, banking executive and real estate developer, was rushed to Northwestern in need of heart surgery. Now deceased, Mr. Feinberg liked to joke that, had the ambulance turned right rather than left, another hospital might've gotten the $100 million in grants that his grateful family foundation gave Northwestern's medical school and the hospital. He said he never thought of giving money to a hospital until his stay in one. That explains why some Northwestern Medical Faculty Foundation doctors recently began asking patients to waive the privacy rules. Of local academic medical institutions, only the 500-plus physician group and Rush University Medical Center ask patients for permission to use medical info for fund raising. Rush began seeking the waivers last summer in two departments. DIFFERENT APPROACHES Northwestern Memorial Hospital itself, operating independently of the physician group, promises to use only basic demographic information for its appeals, as does Children's Memorial Hospital, Loyola University Medical Center, the University of Chicago Hospitals and the University of Illinois Medical Center at Chicago. Evanston Northwestern Healthcare only solicits previous donors and patients who have given permission. Most fund-raisers agree that patients' medical histories make prospecting for donors faster and easier. Individual donors — including patients — account for 66% of donations to hospitals, says the Virginia-based Assn. for Healthcare Philanthropy. But about half of patients will turn down requests for permission to use their information for fund raising, says William McGinly, president of the trade group. Indeed, asking patients to waive their records privacy upon arriving at the hospital may create the perception the institution is more interested in money than the patient, says Thomas J. Sullivan, president of Children's Memorial Foundation, the hospital's fund- raising arm. Northwestern Medical Faculty Foundation says it's simply trying to comply with federal regulations and permit the flow of information between the medical group and university, which are separate entities but work together on fund raising. James Schroeder, faculty group CEO and a rheumatologist, wouldn't disclose which medical specialties ask patients to sign the waivers, except to say, "it's being used in those practices who have active research programs that would be of potential interest to our patients." He points out, "They don't have to sign it." SOURCE: Crain's Chicago Business, IL http://chicagobusiness.com/cgi-bin/news.pl?id=14589 * * * Murray Charters <[log in to unmask]> Please place this address in your address book Please purge all others Web site: Parkinsons Resources on the WWWeb http://www.geocities.com/murraycharters ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn