Doing Research Ethically - Using Your Health Data, Including Diverse Perspectives and the Future of
Have you ever wondered how your health data is used in research? Is that research being done ethically? Who
is involved in health research and why does diversity matter?
In the age of Fitbits, electronic medical records, and big data, it’s natural to wonder whose health data is
being accessed, how our health data is being used, if it is being used to improve health care, and whether
our privacy is being kept. How do we ensure research is conducted ethically and what are some key
We don’t have all the answers, but this session explored these issues, getting clarity on what
protections are in place, areas that are being improved on, and where things are going. All of the speakers will
be approaching these topics from a patient-oriented research perspective.
Our speakers include Michel White, entrepreneur, patient partner and advocate; Kim McGrail, faculty with the
UBC Centre for Health Services and Policy Research and Scientific Director of Population Data BC; Brittney
LaPietra, BC SUPPORT Unit Fraser Centre Research Navigator with a background in law and ethics; and other
special guests with expertise in patient-oriented research and diversity.
Data and the Public Good
Presented by: Kim McGrail
Presented by: Michel M. White, Patient, Caregiver, and Patient Advisor.