Ask and ye shall receive: study

Many Americans will do their part when asked to allow their heath records to be used for medical research, but the operative phrase is “when asked.”

And, for a plurality of those who do volunteer, that means being asked each and every time their records are to be used, according to a recent study whose author said that it may be the first of its kind, specifically focusing on patient attitudes about healthcare privacy in the area of clinical research.

A pair of preliminary reports and two PowerPoint presentations about the study conducted by veteran privacy researcher Alan Westin, emeritus professor of public law and government with the Department of Political Science at Columbia University, were presented during two days of meetings earlier this month in Washington before the Committee on Health Research and the Privacy of Health Information: The HIPAA Privacy Rule. The committee operates under the Board on Health Sciences Policy of the Institute of Medicine at the National Academies of Science.

Among its goals, the committee is to “consider the needs for privacy of identifiable personal health information and the value of such privacy to patients and the public,” according to explanatory material about it on the IOM Web site. The committee is to make recommendations about retaining or changing the status quo and seeking to balance “the needs and benefits of patient privacy … against the needs, risks and benefits of identifiable health information for various kinds of health research.”

{It’s no surprise to anyone but researchers that the public supports medical research, BUT not unless they are first asked for consent to use their health records. Consent for research will soon be easy and instantaneous when new online independent consent management tools become available that ensure we decide who sees our electronic health records. This story discusses the new Westin/Harris survey results on Health Research and Privacy, Oct 2, 2007. ~ Dr. Deborah Peel, Patient Privacy Rights}

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