This is a patient-led initiative from IMHA’s Patient Engagement Research Ambassadors in collaboration with the PxP (For Patients, By Patients) platform. There will be four webinars throughout the year, and the first will be about demystifying the research process from patient partner perspectives.

Audience

The priority audience is patient partners across different levels of expertise but all members of the research team are invited to attend. This webinar series is disease agnostic, meaning the topics will not be specific to any disease or body system.

Background

The webinar series is all about patient engagement in health research, also known as patient and public involvement (in the UK) or consumer involvement (in Australia). ‘Patient engagement’ in health research is where patients are research team members. This is different from volunteering to be a research participant where you might help advance research or healthcare, but a research participant generally does not give input into the research study itself.

Information about PERA

CIHR-IMHA is the Canadian Institutes for Health Research Institute of Musculoskeletal Health and Arthritis. The current PERA (Patient Engagement Research Ambassadors) meet virtually, provide insights and perspectives from their own lived experiences and those from their communities to help IMHA achieve its goals and priorities.

Speakers and Agenda

Ron Beleno is an active advocate for dementia, caregiving, aging, and research communities.  Being a caregiver to his father who lived with Alzheimer’s for 10+ years to age in place at home until January 2018, Ron utilized technology, community, and access to research to support his family’s life to live well and as best as possible. In recent years, he has been called upon to do presentations across Canada and Internationally for Alzheimer’s Societies, communities, police, and researchers to share his knowledge on living safely with dementia, caregiving strategies, technology innovation in health care, and patient engagement with research and industry. Ron is the Co-Chair of AGE-WELL’s Older Adult and Caregiver Advisory Committee and received their honorary fellows award for 2020. He is an advisor and presenter for groups such as the Alzheimer and Dementia Societies across Canada, a Coach with  Healthcare Excellence Canada, a Patient and Family Advisory Member with the  Toronto Dementia Research Alliance, a Board Member with the Ontario Strategy in Patient-Oriented Research Unit (a Provincial SPOR) and other numerous organizations.

Mary Beaucage is Anishnaabe, from Nipissing First Nation, part of The Anishinabek Nation and Robinson Huron Treaty. She spent her career working in Retail Management, honing her skills in hiring, coaching and succession planning, as well as opening new stores, analyzing markets and business trends. She is a vulnerable and engaging storyteller who trusts you with her story. Mary has type 2 diabetes and was diagnosed with end-stage kidney disease in 2013 and started dialysis that year. In March 2015, Mary received a kidney from her cousin Janice, who lives in Manitoba. Mary is currently waiting for her second transplant. Mary has been active as a patient research partner, a consultant and advocate since 2016 including roles with Can-SOLVE CKD, CDTRP, Ontario Renal Network, National Indigenous Diabetes Association and Ontario Health.

Trinity Lowthian is currently completing her Honours Bachelor of Food and Nutrition Sciences at the University of Ottawa and will graduate in 2024 as a Registered Dietitian. She is also a Team Canada para-fencer and competes internationally in wheelchair fencing. Having been involved in research and patient engagement for several years, she brings a strong voice to her new role as an IMHA Patient Engagement Research Ambassador. As a member of the Youth Advisory Committee for The Canadian Collaborative for Childhood Cannabinoid Therapeutics, Trinity has spoken at international conferences about the importance of involving patients in research and has contributed to the development of several journal articles and the methodology of studies. She has also had experience in a student internship position at the Ottawa Hospital Research Institute working with patient partner engagement when developing Core Outcome Sets for venous thromboembolism (blood clot) studies. In her new role as a Patient Engagement Research Ambassador, she looks forward to bringing her personal experience with musculoskeletal health to continue advocating for what matters to patients.

Ellen Wang is a MPT/PhD student under the supervision of Dr. Linda Li at the University of British Columbia. She is also the Programs Coordinator at Arthritis Consumer Experts (a patient advocacy organization), and a patient herself. Her current research is at the intersection of health equity and patient engagement. Broadly speaking, her work aims to uncover how best to reach and partner with diverse and underserved groups/communities in health research. Outside of research, Ellen is passionate about movement, music and food.