Patient Engagement Working Group Members
Kerry Kuluski is the Dr. Mathias Gysler Research Chair in Patient and Family Centered Care at the Institute for Better Health at Trillium Health Partners. She is also an Associate Professor at the Institute of Health Policy, Management and Evaluation (University of Toronto) She is an Applied Health Services Researcher and a Social Worker by training. She received her PhD in Health Services and Policy Research from the University of Toronto followed by a Postdoctoral Visiting Fellowship at the University of Oxford where she worked with the Health Experiences Research Group. Following that she was a Scientist at Sinai Health System where she spent 9 years building a research program in patient and caregiver experience. She studies the health care experiences of patients and families and works in partnership with them to co-design health care service improvements.
Katie N. Dainty
Dr. Katie Dainty is a PhD-trained social scientist and holds a Research Chair in Patient Centred Outcomes at North York General Hospital Research Institute (Toronto, Ontario). She is also an Assistant Professor in the Institute of Health Policy Management and Evaluation at the University of Toronto. Dr. Dainty has an extensive background in both clinical and health services research and now leads a large program of qualitative research focused on understanding patient-centred outcomes in the critically ill, organizational behaviour in healthcare and public engagement in research. She is co-Chair of the Public Engagement Committee of the Canadian Resuscitation Outcomes Consortium and a member of the American Heart Association Subcommittee on Science. She was awarded the inaugural CIHR Rising Star Award for Knowledge Translation, a Young Investigator Award from the American Heart Association and has over 60 academic publications.
Susan Law is Director of Research and Scientist at the Trillium Institute for Better Health, Mississauga, and Associate Professor at IHPME, University of Toronto. She leads the Canadian Health Experiences initiative as part of an international collaboration that focuses on personal narratives of health and illness, using qualitative research and video recording (see: www.healthexperiences.ca; www.dipexinternational.org). Susan is also leading work on patient and family engagement as well as on co-designing health system improvements. She has an MHSc in Health Administration (University of Toronto) and a PhD from LSHTM (University of London UK).
Lynn Moore has had an extensive career working in leadership and consulting roles in a range of health organizations, including several disease specific charities. This experience has been at organizational, provincial (Ontario) and national levels. Roles have included advocacy, government relations, adult education and management. For over a decade she has served as faculty (volunteer) with IHPME at the University of Toronto.
Her career has contributed to a solid understanding of patient experiences. This understanding is rooted in personal experience with the health care system acquired as a result of a living with a congenital disability and several chronic conditions. More recently this experience was deepened through a series of in-patient stays. Lynn serves as a patient representative on a number of committees/working groups, including:
- Sinai Health System, Patient and Family Centred Care Planning Committee;
- Bridgepoint Active Healthcare’s Integrated Care Plan Initiative;
- Health Standards Organization’s Governance and Leadership Technical Committee and Governance Working Group; and
- University of Toronto, Institute of Health Policy, Management and Evaluation, Patient Engagement Workgroup
Francine Buchanan, MLIS
Francine Buchanan is a mother child with medical complexity who spent his first 507 days of life as an inpatient in a paediatric ICU. After the birth of her son, Francine transitioned from a successful career as corporate strategist into improving the healthcare experience for caregivers of medically complex kids. She is currently a health services research PhD Candidate at the University of Toronto, a member of the SickKids Family Advisory Network and holds the position of Co- Chair of the SickKids Research Family Advisory Counsel.
Alies Maybee brings her patient, caregiver and professional background to her passionate commitment to meaningful public involvement in all aspects of healthcare. Alies has been a patient partner on over six research teams and has led an observational study of patient partners in research. She delivers workshops on patient engagement in research and sits on various advisory councils.
Don Willison is Associate Professor at the Institute of Health Policy Management and Evaluation, in the Dalla Lana School of Public Health, University of Toronto where he teaches a graduate course in research ethics. He has led workshops for grad students on “How to involve patients and the public in your research”. He is also an affiliate of the Joint Centre for Bioethics at the University of Toronto.
A large focus of his research has been in the area of governance over the use of personal information and biological samples for health research and planning. Much of that research has involved learning the perspective of the public in these matters through surveys, focus groups, and deliberative dialogues. Don is a strong advocate for active patient involvement in research. He has recently led the development of an innovative governance process for Diabetes Action Canada’s data repository where people living with diabetes are not just consulted, they constitute half of the decision-makers at the table.
Sara Guilcher is an Assistant Professor at the Leslie Dan Faculty of Pharmacy and has cross-appointments to the Institute of Health Policy, Management and Evaluation (IHPME) and the Rehabilitation Sciences Institute at the University of Toronto, Ontario, Canada. Sara received her PhD in Clinical Epidemiology and Health Care Research from IHPME. Sara is a physical therapist by training and funded by the Canadian Institutes for Health Research (CIHR) Embedded Clinician Scientist program working with Health Quality Ontario. As an applied health services researcher, Sara’s goal is to co-create innovative science that optimizes person-centred physical, mental and social activation and care for individuals with multimorbidity and disability. Sara is co-leading research to improve experiences and health and well-being outcomes related to care transitions and overall care journeys. Sara and her team often use mixed-methods and partner with patients, caregivers, clinicians and decision-makers to co-design research and service improvements.
Sara Shearkhani is a Ph.D candidate at the Institute of Health Policy, Management and Evaluation at the University of Toronto. Under the supervision of Dr. Walter Wodchis, Sara is completing her thesis entitled “the relationship between caregiving and formal healthcare costs”. She is also a caregiver and the co-founder of a volunteer group “Family Caregivers Voice”, dedicated to educating caregivers on their journey as well as healthcare professionals on the value caregivers can bring to the table. Sara has a certificate in Patient and Community Engagement Research from University of Calgary and has been partnering with patients and caregivers in different projects since 2014. She was named one of the faces of change in Ontario in 2014 and received the Canada Cares Award in 2017. She is also a fellow at the Canadian Frailty Network.