Professional Interest
My current academic work is in three areas:
- For several years, I have been doing research around governance over the use of personal information and biological samples for health research. In this area, I have done surveys, focus groups and deliberative dialogues with a variety of stakeholders around (a) alternatives to traditional consent approaches and (b) the conditions under which existing health and other personal records may be used in clinical research (for recruitment and for monitoring long-term outcomes) and for research that may have commercial dimension to it.
- In the past 5 years, I have been doing work exploring the boundaries between research and practice in public health, focusing on the ethical conduct of public health evaluative activities, regardless of whether they be labeled research, surveillance, quality improvement, etc. This has led me to conclude that attempts to clearly distinguish the two are counter-productive. Instead, a more appropriate model of addressing the research-practice continuum is through the lens of the learning healthcare system.
- Consequently, I have been developing a research agenda around systems to support public/patient participation and involvement in the learning healthcare system. By “participation”, I refer to ways to increase recruitment and retention in clinical studies. By “involvement”, I mean ways of increasing public/patient input into (a) setting research priorities; and (b) providing input into specific projects around health outcomes of relevance to patients, and ways to improve recruitment and retention into studies.
Impact
My work has informed much of the CIHR’s policy around privacy and access to data for research purposes – most notably through the document “CIHR Best Practices for Protecting Privacy in Health Research” , much of which has been incorporated into guidance the second edition of the Tri-Council Policy Statement on Ethical Conduct of Research Involving Humans.
My work with Public Health Ontario resulted in the development of an innovative harmonized approach to the ethical conduct of public health evaluative activities.