Current IMHA Patient Engagement Research Ambassadors (PERA)
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.
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.
Linda Hunter
Twitter: @lhunter1310
Linda Hunter is a semi-retired nurse and has lived with chronic pain for over 8 years. She has been diagnosed with spinal stenosis, osteoarthritis, and severe degenerative disc disease. Her journey to diagnosis and treatment options was interesting and challenging - some options helped, some did not. Linda had a double spinal fusion with disc replacement and bone grafting one year ago. She has regained mobility and has been able to resume more activities that allow her to have an enhanced quality of life. "I think it is vital that the patient voice is respected, listened to, and incorporated into change in the delivery of health care services, including research. Patients are experts about their disease and the lived experience. They are becoming more informed and knowledgeable, and it is imperative that they are included in the development of plans of what is researched."
As a nurse, Linda has provided empathetic and compassionate care to patients at vulnerable points in their lives. Through her graduate education, she understands research and appreciates how important – yet how difficult it can be – to sustain the research required for creating change. Her professional life as a clinician, an educator and an administrator, combined with her experiences as a patient, have allowed her to grow, to become more introspective, and to realize that she has experiences that can help others in similar situations. "I have come to realize that kindness and a smile are free and allow patients to feel much better. Trust in healthcare staff by patients needs to be gained. Listening skills are paramount to understanding the patient perspective. I want to help shape the research that will be vital to providing better treatments, support and partnerships with patients living with these diseases."
Jim Kempster
Jim Kempster is a retired meat inspector and retired Medical Laboratory Technologist. His work experience also includes several other disciplines including work as a logger, labourer, truck driver, milk man, and as a welder in the Royal Canadian Armed Forces for an enlistment term of three years.
He was born with a congenital hip dislocation. He was treated at the Crippled Children's Hospital in Vancouver. This condition did not inhibit him from being very physically active for the first thirty years of his life. Two health challenges took place during his teens at which times he suffered bouts of Rheumatic Fever. After participating in a YMCA program of running to honour the Centennial in 1967, he began to experience an increasing amount of hip pain. Running was curtailed. He was told he was too young to receive a hip replacement. Finally, the first hip prosthesis was done in 1979, and the second in 1981. Full activity was restored. The first prostheses lasted for12 and for 16 years at which times the Teflon sockets wore out. (He had gone back to jogging!) The left side revision is still intact but the right side has been replaced five more times. Knee pain throughout the years has resulted in both knees being replaced. Arthritis has plagued Jim increasingly throughout the past years with the major pain coming now from the shoulders and hands. He has had also operations for carpal tunnel and to release locking fingers.
Throughout the past twenty-five years Jim has been an active advocate to get better treatment for sufferers of arthritis. Furthermore, Jim has worked as a consultant with The Canadian Orthopaedic Society. This has resulted in his being put in contact with patients or prospective patients recovering from or anticipating joint replacement. Contact was made in order to provide perspective and encouragement. Having had experience for several years as an ambassador for the Orthopaedic Society, Jim is well motivated to exercise a dedicated participation with the Patient Engagement Research Ambassadors. His experience in a hospital setting and as an advocate for arthritis sufferers has given him much incentive to continue to help other sufferers and to influence health care. Love and compassion have their foundation in care for others.
Trinity Lowthian
Twitter: @TrinityLowthian
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.
Linda Niksic
Twitter: @LindaNiksic
Linda Niksic is dedicated to improving the lives of individuals and building capacity in organizations, to be purposeful, inclusive by design, user centric and high performing. With over 20 years of experience in federal public service and in non-profit, municipal government, private and academic sectors, Linda’s leadership and experience living with muscular dystrophy, has led to sustainable results improving our community. This includes public relations work to help save Ottawa’s historic Aberdeen Pavilion from demolition, to leading a Youth Safety Audit in Ottawa’s Chinatown where young women requested a bus stop relocation from in front of a pool hall, to in front of a drug store, where they would feel safer waiting for their bus. Linda was also listed by the principal of Ottawa’s St. Anthony’s School at its 100-year celebration as one of the people who made a difference for St. Anthony School, 15 years after she worked at the school as a Community Developer. Linda has also interviewed Canadians across Canada who are homeless, living on the streets or living in overcrowded and unsafe conditions, and she has used their stories and insights to further policy development, research, and evaluation in the federal government.
Anna Samson
Twitter: @chronicallyillx
Anna Samson (they/she) is a desi, queer, disabled person living just outside of Toronto, Canada. They are a writer and poet studying English at McMaster University and an advocate for disability and mental health. They have ankylosing spondylitis, fibromyalgia, and more. They have experienced symptoms since they were 15/16 years old and now permanently use a cane and frequently use a walker to ambulate. They are passionate about using their intersectional lived experiences to raise awareness for chronic illnesses, disabilities, and mental health.
They are an ambassador for Healp.co and Take A Pain Check where they raise awareness for chronic illnesses and disabilities and create content about living with rheumatic diseases. They are also a contributing writer for Health Union where they write articles informed by their lived experience for axialspondyloarthritis.net, chronicdryeye.net, and insomnia.sleep-disorders.net.
You can find more of their advocacy work on Instagram and TikTok @chronicallyillxo
Dawn Richards, PhD
Consultant, IMHA Patient Engagement in Research Strategy
Twitter: @TO_dpr
Dawn Richards, PhD, is the founder of Five02 Labs Inc. Her firm provides traditional services including project management and preparation of grants, manuscripts, corporate and lay language materials; along with those to incorporate the patient perspective and through the development of relationships with patients and patient organizations. Clients are from all sectors. With a PhD (Analytical Chemistry) from the University of Alberta, Dawn has worked in a variety of roles during the past 20 years, however her diagnosis with rheumatoid arthritis almost 15 years ago instigated a journey to intertwine her passion for science with making the most of her diagnosis.
As a patient advocate and volunteer, Dawn is Vice President of the Canadian Arthritis Patient Alliance and a member of The BMJ's Patient Panel. She served as an IMHA Research Ambassador from 2014 - 2019 and was the first Patient Advisor of the Canadian Medical Association's Wait Time Alliance. Dawn advocates for arthritis awareness, access to treatment, the importance of research and the inclusion of patients both in decision-making and as research collaborators.
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