EVENT

Webinar Series 2024

The main PxP conference will take place again in Fall of 2024. Ahead of this, we are delighted to launch a webinar series in collaboration with the Patient Engagement Research Ambassadors (PERA) at CIHR-IMHA.

We are very grateful to PERA for developing four webinars that will be held virtually across 2024 on the PxP Zoom platform. As with the main conference, the sessions will be completely free to attend and a recording will be shared afterwards. Closed captioning is available and live translated captions in over 30 languages.

Learn more about PERA

Webinar 3

Topic: Different opportunities to engage as a patient partner

Date: Oct 8, 2024

Time: 3:00 PT / 6:00 pm ET / 10:00 pm UTC

Registration Link

Deb Baranec

Patient Advisor, Deb Baranec is a retired Auditor who has lived with Knee Osteoarthritis (KOA) for 35 plus years, resulting in several surgeries and wearing 5 different braces before having total left knee replacement (2010) and total right knee replacement (2015). Getting her mobility back, she turned to bettering her overall health by losing almost 190 pounds.

Deb has become an advocate for bone and joint health by becoming more involved in the Alberta Bone and Joint Health Strategic Clinical Network, which included participating and presenting at a workshop for Obesity and Osteoarthritis. Deb has also participated in the early development of a study on the impact of obesity on gaits after total knee arthroplasty, and has provided input as a consumer representative investigating the effects of prebiotics supplements on chronic inflammation for obese patients with knee osteoarthritis. Deb has presented and shared her story and journey to wellness with third year medical students and when asked provides motivational talks to Weight Watchers.

Deb currently has an ongoing advisory role to a University of Calgary research group for a new tri-compartment brace that will be going into pre-clinical trials later in 2020. Additionally she is working as a patient advisor with the University of Alberta on a research study “Coping with COVID 19: Impact of Delayed Elective Surgeries - Mental Health & Substance Use Needs and Delivery.

Deb is a PERA (Patient Engagement Research Ambassador) with CIHR/IMHA, and Patient Partner providing advice on learning modules for Clinical Trials Training Programs - CANTRAIN, promoting patient participation and engagement through clinical trials training.

Tucker Bottomley

Tucker is a transgender male from the east coast with rheumatoid arthritis, ADHD, hypothyroidism and a few other comorbidities. Currently in his early 30s, he was diagnosed with rheumatoid arthritis at 22 and unmedicated for 8 years. He lived on disability spending his time producing music, playing in multiple bands and touring the country but is now too limited by his disability. In 2018 he co opened a queer centered tattoo shop which he manages.

Tucker has participated in a local anaesthesia patient partner research group since 2019, has co-conducted a workshop in the Dalhousie pharmacy school on inclusivity for the past two years, since January 2024 has become a part of a new patient partner group for the institute of genetics, recently has participated in a patient partner panel at Dalhousie University for a workshop centered around patient engagement, and continues to provide a safer space for queer and marginalised folks in the tattoo industry in his hometown of Halifax, Nova Scotia.

Beth Ciavaglia

Beth is a physiotherapist who works in Quality and Risk Management in long-term care. A recent breast cancer survivor, Beth lives with the musculoskeletal limitations brought about due to radiation and multiple surgeries. After working for 18 years at the front line as a physiotherapist in acute care, she is an expert both professionally and personally on how physical limitations and pain can affect quality of life. Beth prides herself as bringing the patient perspective to her advocacy work, especially in research and systems design. In addition to taking on the Patient Engagement Research Ambassador role, Beth is on the Board of Directors of a Arnprior District Health and Vice Chair of the Patient and Family Advisory Council for the Ontario Institute of Cancer Research.

Homira Osman

Dr. Homira Osman is the VP of Research & Public Policy at Muscular Dystrophy Canada. Her background is in clinical audiology, neuroscience research and knowledge translation. In her role, Dr. Osman has overall strategic and operational responsibility for all elements of research, knowledge translation, clinical relationships and advocacy work at MDC. Within NMD4C, Homira serves as the patient-engagement lead and contributes to all of the work packages.

Webinar 2 (past event)

Topic: Motivations for being a patient partner in research

Date: May 9, 2024

Time: 1:00 pm - 2:15 pm PT / 4:00 pm - 5:15 pm ET / 8:00 pm - 9:15 pm UTC

Recording Available Here

Larry Funnell

Motivated by an unexpected diagnosis of osteoporosis, Larry is a determined advocate for improvements in the understanding and management of osteoporosis in Canada. After retiring in 2006 from a 35-year career in the federal government, he immediately launched a second career as a volunteer, drawing on his lived experience to increasingly participate in efforts to raise awareness, fundraise, advocate for and otherwise support osteoporosis programs.

Larry spent 17 years on the Executive Committee of the Canadian Osteoporosis Patient Network (COPN) of Osteoporosis Canada (OC). His many roles included COPN Chair, member of OC’s Board of Directors and patient partner on the steering committee for the 2023 update of the Guideline for Osteoporosis. In 2013 he led the creation of the Osteoporosis Patient Bill of Rights, developed by patients, for patients. He also led the creation of Bones ‘n’ Beer, a unique and successful series of events to raise awareness of men’s bone health.

Now a well-seasoned patient partner, Larry continues to bring the perspective of a man living with osteoporosis to numerous research initiatives.

Therese Lane

Therese brings her lived experiences to many different areas of research and healthcare. Living with pain and arthritis since her mid-teens, she is currently a volunteer with the Canadian Arthritis Patient Alliance as a Steering Committee member and is actively involved in CreakyJoints’ Canada-based efforts. She is a patient partner with a number of different research projects and initiatives including the Canadian Institutes of Health Research’s Strategy for Patient-Oriented Research funded Chronic Pain Network, a project funded by the Social Sciences and Humanities Research Council called “Toward democratization of health: a sociological exploration of patient engagement in pain research (PEPR),” and provides her lived perspectives on the Canadian Pain Society’s Equity, Diversity and Inclusion Committee.

Her experiences with living with pain and arthritis have led to her helping others understand and see how pain treatment is not always reaching the people who need it most (such as those who are marginalized, live in poverty, and women). Her own past history of active addiction and untreated mental health issues have made her all too aware of the stigma, judgment, and barriers faced by those who wish to access appropriate treatment for pain. Like many individuals with lived experience, Therese brings her perspectives to the table in hopes of helping others.

Anna Samson

Anna Samson (they/she) is a desi, queer, disabled person living near Toronto, Canada. They are a writer, poet, and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, and some mental illnesses. They have experienced AS and fibro symptoms since they were a child but it worsened during their teens. Anna now uses a cane full-time and frequently uses a walker. They have a Bachelor of Arts in English and use their writing and communication skills to create content about their conditions and how it affects their life. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, and mental health, along with patient engagement in research. You can follow them on social media @DisabilityWithAnna

Kimberly Strain

Kimberly Strain lives in British Columbia, Canada, and has been a patient partner in a variety of initiatives since 2012 including committees, a patient research partner, a member of Patient Voices Network, and a co-author of the Patients Included charters. She also is on the Board of Directors for the Institute for Safe Medication Practices Canada and recently was co-chair for the Solutions for Kids in Pain (SKIP) Patient and Caregiver Advisory Committee. In her spare time, Kimberly has a passion for photography and the arts.

Webinar 1 (past event)

Topic: demystifying the research process from patient partner perspectives

Date: March 21, 2024

Time: 2:00 pm - 3:15 pm PT / 5:00 pm - 6:15 pm ET / 10:00 pm - 11:15 pm UTC

Recording Available Here

Ron Beleno

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

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

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

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.

Additional Information

Audience

Our 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.