The Flipside: Privacy As A Promoter, NOT A Preventer of Health Information Exchange
In the thoughtful and informative article by Deven McGraw, James Dempsey, Leslie Harris, and Janlori Goldman, Privacy As An Enabler, Not An Impediment: Building Trust Into Health Information Exchange (abstract), in the most recent issue of Health Affairs, the authors present a clear and compelling argument that turns the privacy-as-a-barrier-to-HIE on its head. They contend that "enhanced privacy and security built into health IT systems will bolster the public trust and confidence that are critical to the rapid adoption of health IT and realization of its benefits." According to the article, 17 percent of adults -- 38 million people -- report that they engage in some form of "privacy protective behavior" (Harris poll), where they withhold health information or seek it out-of-network to prevent its inappropriate use. Even more privacy concerns are reported among the chronically ill and racial and ethnic minorities (California HealthCare Foundation poll). Such apparent lack of trust in the healthcare system must be addressed quickly and thoroughly on the eve of this electronic transformation. The development of a more comprehensive "nuanced approach to the role of consent" and a much stronger role for enforcement will go a long way toward that end.
In Massachusetts, Health Care For All and the American Civil Liberties Union of Massachusetts introduced a bill (with lead sponsors Senator Pacheco and Representative Rushing) to bolster privacy protections for electronic health records: requiring security audits, providing remedies for information breaches, and offering whistleblower protections, helping ensure the robust enforcement the authors recommend. Everyone should benefit from the great potential offered by health information technology. "The challenge is to find the right mix of statutory direction, regulatory implementation, and industry best practices to build trust in e-health systems and enable the widespread adoption of health IT." We must meet that challenge head on.