Current IMHA Patient Engagement Research Ambassadors (PERA)
Eileen Davidson is a rheumatoid arthritis patient advocate and blogger from Vancouver BC. She is a regular writer for Creaky Joints, an ambassador with The Arthritis Society and patient advisory board member (APAB) with Arthritis Research Canada. Healthline, Everyday Health and Health Central have called her blog and social media channels one of the best in the arthritis community. When she is not advocating or writing about arthritis she is focusing on exercise, painting and her young son Jacob. Her mission is to promote a better tomorrow for those living with arthritis and her involvement in research plays a key role in that.
Trudy Flynn is a retired Nurse from Nova Scotia. She was diagnosed with Fibromyalgia over 25 years ago. She controls her Fibromyalgia with exercise, is a long-distance runner and follows the slow but steady mantra. Trudy was part of a Clinical Trial in 2009 through the Nova Scotia Pain Clinic. Her first experience with Patient Engagement was in 2014 as part of the steering committee for the CIHR - James Lind Alliance Adult Fibromyalgia Priority Setting Partnership. Trudy was a Patient Representative at the Canadian Pain Summit in Toronto in September, 2014, where she realized that Knowledge Translation and Patient Engagement were issues she was very interested in pursuing.
In October 2014, Trudy also became a Research Ambassador for CIHR – IMHA. In 2017, Trudy coauthored a paper published in the Canadian Journal of Pain, called “A paradigm change to inform Fibromyalgia research priorities by engaging patients and health care professions”. In 2018 Trudy wrote about her James Lind experience in an article titled “The James Lind Alliance: Identifying the Top 10 Canadian Research Priorities for Fibromyalgia - a Patients Perspective” for the CIHR website. In 2019 Trudy was a key contributor for the IMHA Online Resource Library: Fibromyalgia section to enable people with Fibromyalgia, Researchers and Clinicians to have a portal to important information on this condition. In 2019 Trudy joined the Maritime SPOR Support Unit (MSSU) to help promote and participate in Patient Engagement in the Maritime Provinces. Trudy is currently on the Wait List for the PaCER (Patient and Community Engagement Research) program at the University of Calgary. Trudy is very excited to be part of the new CIHR – IMHA Patient Engagement Research Ambassadors.
Linda Hunter is a semi-retired nurse who 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.”
Gillian Newman is currently completing her Masters of Social Work following her recent graduation from the University of Guelph with a BA in History.
Gillian is an involved member of the scoliosis community, having been diagnosed with scoliosis at age 12. More recently, she has attained a position as a Board Member of Curvy Girls, a non-profit organization dedicated to providing support to those suffering from scoliosis around the world. As a Board Member, Gillian has helped establish various initiatives, including a peer mentorship program that provides ongoing guidance for both Curvy Girls members and chapter leaders. Gillian has made it her mission to raise awareness about the emotional and physical impact of scoliosis on those diagnosed with the condition within the medical and lay communities.
Gillian previously served for nearly three years as an IMHA Research Ambassador, and is now thrilled, as a health care advocate, to be taking on a new IMHA role as a Patient Engagement Research Ambassador. She looks forward to continuing her advocacy and awareness work with different communities to foster and promote patient engagement and to help tell the stories of health care users who are changing the way society treats and understands musculoskeletal health and arthritis.
Allan Stordy, President & CEO of Arete® HR Inc., is a recognized leader and innovator in the employee and business assistance program industry. His commitment to excellence and strong belief that the workplace should not be the cause of employee health or performance issues, led him to found his respected company in 2009. Under his leadership, Arete improves the well-being of Canadians by proving excellent bilingual assistance services to businesses, associations, organizations, individuals, and families across Canada.
Allan’s interest in total health and advocacy for health research began when he developed a chronic disease that severely impacted his life. He is a founding Board Member and past Chair of the Canadian Skin Patient Alliance (CSPA), served on the Institute Advisory Board of CIHR-IMHA (2007-2014), is a past member of IMHA’s Research Ambassadors, is a past member of the advisory council to Alberta’s SPOR Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit Platform, and served on CIHR’s Patient Engagement Committee (2018) Gold Leaf Prize for Transformation. Currently Allan is a Board Member for the AARC Adolescent Recovery Centre, on the CIHR Citizen Advisory Committee and the National Steering Committee for the Strategy for Patient Oriented Research, and a member of the Canadian Standards Association – Technical Committee CSA Z1008 Management of Substance Related Impairment in the Workplace.
Crack! Christine Thomas was only 42 when, bending to lift her newborn daughter, she fractured her spine. She had no idea of the painful and transformative road she would have to travel to build stronger bones and reclaim her life from the clutches of osteoporosis.
Christine is a nationally recognized author and speaker in Canada. Having been a senior negotiator in the Canadian Government and having studied at the universities of Carleton (Honours Bachelor of Commerce), Queen's (Executive MBA) and Harvard (Program on Negotiation), Christine has honed her communication skills. As the author of Unbreakable: A Woman's Triumph Over Osteoporosis, she has won numerous awards (Eleanor Mills Inspiration & Back Bone awards as well as a nomination for a Woman of Distinction award) and is often seen in the Canadian media delivering her messages with the kind of conviction learned only through hard experience.
Christine has been a volunteer with Osteoporosis Canada (OC) and a passionate advocate for better bone health care in Canada for those at risk of breaking a bone from the disease. Her lived experience has been at the core of the roles she has played, some of which include: Chair of the former Ottawa Chapter for OC; advocating to politicians to support the Ontario Strategy for bone health; executive on the Canadian Osteoporosis Patient Network; and member of the board of directors of OC. Since 2018 she has been a patient representative on the Pharmacotherapy & Knowledge Translation Working Groups updating the Clinical Practice Guidelines for the Diagnosis and Management of Osteoporosis. Christine has learned so much from her experience. She believes that if you truly want to improve osteoporosis outcomes and produce the best guidelines for this condition, you really need a combination of evidence, risks, benefits & the patient perspective!
Dawn Richards, PhD
Consultant, IMHA Patient Engagement in Research Strategy
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.
Legacy IMHA Research Ambassador Members
- Debbie Feldman, Professor, University of Montréal, Past Co-chair
- Pam Sherwin, Founder, Children's Arthritis Foundation, Past Co-chair
- Sabrina Poirier, Consumer
- Larry Funnell, Canadian Osteoporosis Patients Network
- Richard Hovey, Consumer
- Brigitte Lagasse, Consumer
- Anne Lyddiatt, Patient Partners in Arthritis
- Claudia Maltais, Consumer
- Ted McNicol, Canadian Arthritis Patient Alliance
- Jonn Ord, Canadian Dupuytren Society
- Graeme Reed, Consumer
- Dawn Richards, Founder Five02 Labs Inc
- Anna Pileggi, AboutFace
- Erna Snelgrove-Clarke, Past Chair
- Flora Dell, Past Chair
- Barbara Grimster, Lupus Canada
- Blair Boudreau, Seniors Oral Health, NS
- Diane Ladouceur, Active Living Alliance for Canadians with a Disability
- Ina Ilse, Osteoporosis Canada
- Leanne Hall, UBC Skin Care Centre
- Linda Li, Canadian Physiotherapy Association
- Maria Judd, Canadian Health Services Research Foundation
- Mary Brachaniec, Canadian Arthritis Patient Alliance
- Nadia Prestley, Arthritis Research Centre of Canada
- Natalia da Costa, Consumer
- Nicola Birchall, Canadian Paraplegic Association, Alberta Division
- Otto Kamensek, Arthritis Research Centre, BC
- Phil Hughes, Seniors Oral Health, NS
- Priscilla Cole, Osteoporosis Canada
- Regina Willmann, Public/Canadian Chiropractic Association
- Rosanne M. Kyle, Consumer
- Shirley Hundvik, Canadian Osteoporosis Patient Network
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