A Proposal for National Policy Supporting Secure Access to Person-specific Health Data for Quality Life-giving Research

Big breakthroughs in bioinformatics focusing on human biology and disease require very large data sets. However, some public policy rules and regulations present obstacles to health data use for research. Yet, improvements in curing disease and preserving citizen health require access and use of data.

Learning Objectives

• Understand the 'perfect storm' converging around healthcare costs, opportunities for cures with 'big data' linking biomedical and health informatics with genomics and public health databases and the pernicious impact on pressure for ever-increasing privacy regulations and informed consent for access to any personal information. 
• Understand that the potential of the genomic and information revolutions may be stillborn through well-intentioned but misguided health information policy and how privacy policy today is hurting quality, safety, and equity in healthcare delivery.
• Understand what is needed in the way of reform for universal personal health identifier for care and research and how that can improve privacy, security, quality, efficiency, effectiveness, and research.

Speakers Information

Don Eugene Detmer, MD, MA, is Professor Emeritus and Professor of Medical Education in the Department of Public Health Sciences at the University of Virginia and Visiting Professor at CHIME, University College of London. He is a fellow of AAAS, American College of Medical Informatics, American College of Surgeons, and American College of Sports Medicine (emeritus) and American Academy of Nursing (Hon). Don is the immediate past Director for Advocacy and Health Policy for the American College of Surgeons, and a past President and CEO of the American Medical Informatics Association (AMIA) plus a past chairman of the IOM Board on Health Care Services, NLM Board of Regents, and the US National Committee on Vital and Health Statistics. He founded and led the Blue Ridge Academic Health Group for fifteen years.

His medical degree is from the University of Kansas and his master’s degree is from Cambridge University, U.K. His education and training included work at Kansas, Johns Hopkins, National Institutes of Health, Duke, IOM, and Harvard Business School. Faculty appointments have been held at University of Wisconsin-Madison, University of Utah, University of Virginia, and Cambridge University. He served as Vice-President for Health Sciences at Utah and Virginia. In 1991 and 1997, he chaired the IOM committee that produced the Computer-based Patient Record reports. He was a member of the IOM Errors and Quality Chasm committees, plus many other additional studies and the IOM Membership Committee. Dr. Detmer has received the Morris Collen medal from the American Association of Medical Informatics and the Walsh McDermott medal from the Institute of Medicine.