This webinar discussed how Canadians quickly mobilized to meaningfully involve patients, caregivers, and members of the public in the COVID-19 response to the unprecedented demand for rapid evidence synthesis in an evolving, uncertain environment. The Strategy for Patient-Oriented Research (SPOR) Evidence Alliance was committed to including the perspectives of patients and members of the public in prioritizing topics, identifying outcomes that were important to them, interpreting the findings to make them relevant, and accessing the results in plain language, recognizing that they are the end-users of the guidelines and policies that often result from rapid reviews. Two experienced patient partners collaborated with the SPOR Evidence Alliance to co-lead and co-deliver a 10-hour course tailored to meet the unique needs of patient/public partners that included independent learning, discussion boards, and interactive, live sessions. The webinar included the researcher who championed the course, the patient partner co-designers, and a participant.
Andrea C. Tricco is a Scientist and Director of the Knowledge Synthesis Team in the Knowledge Translation Program, Li Ka Shing Knowledge Institute of St. Michael’s Hospital. She is an Associate Professor at the University of Toronto in the Dalla Lana School of Public Health & Institute of Health Policy, Management, and Evaluation. She is also a Co-Director & Adjunct Associate Professor for the Queen’s Collaboration for Health Care Quality Joanna Briggs Institute Centre of Excellence at Queen’s University. Her research program focuses on advancing the science of knowledge synthesis and responding to information needs of decision-makers.
Maureen Smith’s commitment to evidence-based medicine and patient/citizen engagement in research stems from her lived experience with the healthcare system subsequent to a rare disease diagnosis in childhood. She is the chair of Cochrane’s Consumer Network Executive and is involved in several global Cochrane projects and advisory committees. In Canada, she is the chair of Ontario’s Strategy for Patient-Oriented Research (SPOR) Support Unit’s Patient Partner Working Group and serves on the Board of Directors. She is also a member of SPOR’s Evidence Alliance. Maureen served on the Executive of the Canadian Organization for Rare Disorders (CORD) from 2008-2020 and Rare Disease International (2017-2020). Maureen brought the consumer perspective as a co-investigator on the e-COVID-19 living map of recommendations global initiative (June 2020-May 2021). Since August 2020, she is the citizen partnership lead for COVID-END, a global evidence network to support decision making.
Janet Gunderson is a firm believer in patient-oriented research and patient engagement in evidence synthesis, serving on provincial, national and international advisory groups and committees. She brings her lived experience of living with inflammatory arthritis. and expertise as a Cochrane consumer. Janet is a patient partner with the SPOR Evidence Alliance and a member of the Patient Partnership committee. In 2021, Janet co-led an Evidence Alliance course on how to become an effective patient partner on a Rapid Review team. Janet serves on the Patient Engagement committee of the SPOR Chronic Pain Network. She is a member of the Saskatchewan Center for Patient-Oriented Research (SCPOR)’s Patient Partner Advisory Council. Janet contributed to a working group that developed The Patient Oriented Research Level of Engagement Tool (PORLET). Janet is on the steering committee for The Canadian Arthritis Patient Alliance and is also a volunteer with The Arthritis Society.
Amanda Doherty-Kirby is a stay-at-home parent to six young people (ages 8-21) with various diagnoses that have made navigating the medical and educational systems both frustrating and fascinating. She completed a Family Engagement in Research course in Fall 2020 and joined the SPOR Evidence Alliance and COVID-END in Spring 2021. Prior to 2020, she had no idea that citizens could be involved in research as partners. While busy with her family, Amanda is an administrator of a Facebook group for those affected by Maturity-Onset Diabetes of the Young (MODY), shares opportunities for youth to connect with research on Instagram (@youth_in_research), and is an active member of a District Advisory Council for education in lovely PEI, Canada. Amanda is currently partnering on projects to develop training materials for engagement in research and is in the early stages of partnering on an international evidence synthesis project.