ships, working to reduce costs (both financial and nonfinancial), changing cultural assumptions, and improving communications. Brian Kelly, executive director of the Health & Sciences Division at Accenture, a global management consulting firm, details some challenges of managing and aggregating multiorganizational data and the associated influence of current privacy regulations on data activities, including practical challenges and the many entrenched and difficult-to-change systems for data aggregation. Guidance is needed on approaches to ensuring individual health data protection, questions of data ownership, on conveying the benefits of providing access to healthcare data through public advocacy initiatives. Finally, Eugene Steuerle, senior fellow at the Urban Institute, reviews current incentives to share health information that are at odds with positioning clinical data as a public good. Although the benefits of clinical data can be shared by all, the distribution of costs associated with collecting, storing, and analyzing the information are borne by few. In addition, the significant issues with privacy and confidentiality, bureaucratic policies, and providers and intermediaries further complicate structuring incentives, whether financial or otherwise, to share clinical data. Steuerle offers several suggestions on means of restructuring incentives associated with collecting and aggregating clinical data for healthcare improvement and suggests that consumers of health services may ultimately need to be the driving force behind changing current incentives to foster a more favorable approach to clinical data.
The chapter concludes with a summary discussion of six panelists, charged with moving the conversation around a next-generation data utility to an action agenda. The six panelists are Stephen Phurrough, director of the Coverage and Analysis Group at the Centers for Medicare & Medicaid Services (CMS); James Ostell, chief of the Engineering Branch of the National Center for Biotechnology Information (NCBI); John Lewin, chief executive officer of the American College of Cardiology (ACC); Evelyn Slater, senior vice president of Worldwide Policy at Pfizer; Janet Woodcock, deputy commissioner and chief medical officer of the Food and Drug Administration (FDA); Arthur Levin, cofounder of the Center for Medical Consumers; and session chair David Blumenthal, director of the Institute for Health Policy at Massachusetts General Hospital/Partners Health System. They discussed critical questions, including what decisions and actions are needed to advance access to and use of clinical data as a means of advancing learning and improving the value delivered in health care, and they offered perspectives on current activities and opportunity areas in the development of healthcare data resources. Current and emerging “what if?” opportunities to align policy through multiple stakeholder engagement are considered, along with implications of recent legislative initiatives. The identification of opportunities for enhanced coordination, investigation into aspects of policies on consent for data sharing and