If you build it, will anyone come?
In all the discussion about health information exchange and electronic health records and establishing trust among public and private sector organizations, what’s often lost is the voice of the consumer. The goal of widespread EHR adoption is usually expressed not in terms of the number or percentage of health providers, insurance plans, or government agencies that will be using the systems, but instead in terms of what proportion of health records are stored in electronic form, with a vision articulated in January 2009 that all U.S. residents would have electronic health records by 2014 (the same deadline that President Bush intended with his 2004 executive order seeking the same goal of widespread adoption of EHRs). Significant federal funding has been allocated through the American Recovery and Reinvestment Act to provide financial incentives to health care providers to implement and use EHR technology, although adoption rates in the United States, while improving, are still well short of a majority, and full penetration within the next four years seems a very ambitious objective. One factor contributing to the lack of progress on EHRs may be patients themselves: the results of a study by the Ponemon Institute released this week suggest that few Americans have sufficient trust in either the federal government or industry to store and access their personal health data. The Office of the National Coordinator within HHS has for a couple of years been focusing on ways to capture, manage, and honor consumer preferences about disclosing personal health information, but to the extent this survey reflects public sentiment, the unwillingness of individual consumers to allow their health information to be shared may present just as significant a barrier to realizing the health information exchange vision as an7 of the organizational-level issues. Overcoming this resistance will require significant consumer education and outreach to be sure, but the effort could be facilitated by doing more to demonstrate that all appropriate measures are being taken to ensure the privacy and security of personal health information.