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Consumer Control of Electronic Personal Health Information: What Does It Mean? Why Is It Important?

Publication Date

A Report on Three Consumer Focus Group Meetings

Convened in October, 2005 by the Office of the Assistant Secretary for Planning and Evaluation

By: Susan Kanaan Suzie Burke-Bebee Helga E. Rippen

U.S. Department of Health and Human Services

Prepared for: Office for Science and Data Policy

Office of the Assistant Secretary for Planning and Evaluation

Department of Health and Human Services

Contract # 233-2004-5014-XI

Public and private health care sectors recognize that health information technology (HIT) plays a pivotal role for improving health care quality while reducing health care cost. Many new initiatives have created a momentum greater than in the past for adopting electronic health records (ERRs) and HIT in general. In the current environment, the principle that the patient and consumer control their personal health information (PHI) is frequently invoked and linked to the broader principle of patient-centricity. Surveys by the Markle Foundation and the California Health Care Foundation confirm that most consumers are concerned about the privacy and security of their PHI. While many consumers recognize the benefits of EHRs and other forms of HIT, they want and expect to control access of their PHI-who sees it, what they see and under what conditions. An immediate challenge persists in defining what control means to the consumer and soliciting consumer engagement in workable solutions as the industry plans for HIT implementation. To this end, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) within the Office of the Secretary at the Department of Health and Human Services hosted three consumer focus group meetings in October 2005 for day-long discussions on these topics. This report provides a description of the focus groups' discussions. [53 PDF pages]