Other - D. Willison: Persistent challenges and possible approaches in reconciling access and privacy in secondary use of personal information for health research

Presenter:

Don Willison, ScD

Don Willison is Associate Professor, Department of Clinical Epidemiology and Biostatistics, at McMaster University.  He has worked with the Canadian Institute of Health Information (CIHI), the Canadian Institutes of Health Research (CIHR), and several Canadian privacy commissioners’ offices.  He is an external member of CIHR’s IHSPR Advisory Board working group on health information.  He is a co-author of the CIHR Best Practices for Protecting Privacy in Health Research, September 2005.

Location:

Ontario Agency for Health Protection and Promotion
415 Yonge Street
Suite 1601
Large Boardroom
RSVP: Vincy Perri (416-314-1877)

Abstract:

Academic researchers look, with anticipation, toward the possibilities that the common interoperable electronic health record (EHR) will offer enhanced ability to conduct a wide variety of health-related research.  At the same time, access to these data will continue to prove elusive until such time as a number of persistent challenges are addressed.  In this presentation, Dr. Willison identifies several inter-related challenges in the governance of research use of health information generally, and some novel challenges in the context of the interoperable EHR.  In response, he then calls for a shift in thinking about:
Dr. Willison argues that changes at the margin are not sufficient.  Attention to these matters is needed sooner rather than later, lest the current “policy by procrastination” lead to further insufficient and inefficient ad hoc amendments to the governance over research rather than a holistic solution.

• the role of research vis-à-vis clinical care, public and population health, and quality improvement.
• the role of consent for use of that information for research; and
• models of governance over the use of personal health information for research