The U.S. health data privacy debate. Will there be comprehension before closure?
ABSTRACT After 25 years of debate about privacy of automated personal health data, the U.S. Congress has set a deadline of August 1999 for enacting health information privacy legislation. The urgency to establish national policy in the United States re-emerges with implementation of a 1996 law mandating a unique identifier for each participant in the U.S. medical care system and the use of a uniform electronic data set for all health information transmitted in financial and administrative transactions. The impact of electronic data storage and transmittal on privacy, health outcomes, and medical care is unclear. A three-step analytic scheme can clarify the issues in the policy debate and for future assessment. The first step is intended to elicit, for the first time, a precise, accurate, and reproducible description of personal health data transactions and chains of transactions, independent of the policy preferences of any interested party. The second step allows the reader to analyze these transactions according to who benefits first and foremost from each. This scrutiny clarifies the reasons why parties to the debate tend to disagree. The third step characterizes how Congress is likely to perceive the policy process and consider its options before enacting any particular set of compromises. Understanding the policy deliberations and potential effects of evolving information technologies and new national privacy rules should aid assessment of results.
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ABSTRACT: The introduction of electronic patient records that are accessible by multiple providers raises security issues and requires informed consent - or at the very least, an opportunity to opt out. Introduction of the Summary Care Record (SCR) (a centrally stored electronic summary of a patient's medical record) in pilot sites in the UK was associated with low awareness, despite an intensive public information programme that included letters, posters, leaflets, and road shows. To understand why the public information programme had limited impact and to learn lessons for future programmes. Linguistic and communications analysis of components of the programme, contextualized within a wider mixed-method case study of the introduction of the SCR in pilot sites. Theoretical insights from linguistics and communication studies were applied. The context of the SCR pilots and the linked information programme created inherent challenges which were partially but not fully overcome by the efforts of campaigners. Much effort was put into designing the content of a mail merge letter, but less attention was given to its novelty, linguistic style, and rhetorical appeal. Many recipients viewed this letter as junk mail or propaganda and discarded it unread. Other components of the information programme were characterized by low visibility, partly because only restricted areas were participating in the pilot. Relatively little use was made of interpersonal communication channels. Despite ethical and legal imperatives, informed consent for the introduction of shared electronic records may be difficult to achieve through public information campaigns. Success may be more likely if established principles of effective mass and interpersonal communication are applied.Health expectations: an international journal of public participation in health care and health policy 12/2010; 13(4):379-91. · 1.80 Impact Factor