The Arthritis NewsletterSpring 2016
Patient Partner Role Model – 20 Years of Volunteer Service in Arthritis Research, Knowledge Translation and Peer MentoringBy Marilyn Muldoon
The Oxford dictionary defines a volunteer “a person who freely offers to take part in an enterprise or undertakes a task”. Perhaps the definition should simply read: see Pam Montie, ideal role model.
The Path to Patient Engagement
Pam Montie has always been a dynamic, driven woman and when rheumatoid arthritis hit with a vengeance in 1985, while Pam still had three children under the age of 11, she was devastated. A computer systems analyst who managed her family’s business, she now walked with two canes, suffered debilitating fatigue and could not fulfill family and business commitments. This stage of Pam’s life continued for 10 years to varying degrees. Finally, her medical team devised a treatment plan that together with Pam’s sheer determination, enabled a return to daily activities and set her on a path of patient involvement and activism which spanned in excess of 20 years.
Pam found far too many arthritis patients had no idea where to turn, how to manage their disease, choose medications or even comprehend the complex nature of arthritis. It was abundantly clear to this intelligent, articulate pioneer that advocacy and knowledge translation for and by patients was clearly a priority.
A Legacy of Service to Arthritis Research and Arthritis Patients
When retirement beckoned there was widespread disbelief. Speaking about Pam on behalf of OMERACT, Dr. Clifton O. Bingham III, Assistant Professor of Medicine, Johns Hopkins University wrote: “I will always be inspired by your incredible dedication to making a difference in the lives of people with arthritis, and your endurance and stoicism in working through the long hours and challenges that you have endured in the process”.
Dr. John Esdaile – Scientific Director, Arthritis Research Canada, wrote upon Pam’s retirement: “The Canadian Institute of Health Research knowledge translation award given to ARC largely hinged on the tremendous work by people like you to improve the lives of people with arthritis”.
Pam’s extensive engagement in research also translated to her exchanges with fellow arthritis patients as APAB Co-Chair Alison Hoens explains “Pam Montie has been a valuable mentor for those recently diagnosed with rheumatoid arthritis, including myself. She is a guiding light for those caught in the thick fog of the combination of seemingly insurmountable information, the array of treatment options and the emotional waves of disbelief and sadness. Pam is the steady, caring voice that provides ‘lived experience’ to personalize the discussions of the recommendations offered by the health care team. Thank you Pam”.
We are inspired to continue to encourage and support patient awareness and involvement in research to honour the amazing legacy left by our own remarkable Pam Montie. She led the way as a pioneer in the early days of patient engagement to ensure that the patient voice was heard at all levels that affect the lives of people with arthritis – education, clinical care, and research.
Highlights From Two Decades of Service