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The Arthritis Newsletter

Spring 2016

Patient Partner Role Model – 20 Years of Volunteer Service in Arthritis Research, Knowledge Translation and Peer Mentoring

By Marilyn Muldoon

depression-and-arthritis



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.

 

Making a firm commitment to become an educated patient advocate, Pam spent time working with The Arthritis Society, Patient Partners in Arthritis, the Canadian Arthritis Patient Alliance and eventually found the unique and welcoming team at Arthritis Research Canada (ARC) as a founding member of what is now known as the Arthritis Patient Advisory Board (APAB). Pam strongly believed the patient voices must be heard and included in meaningful, relevant research. She also believed the patient perspective would eventually be welcomed on an equal footing with doctors, researchers, health care professionals and governments at local, provincial and federal levels.
 

 

Building Engagement Nationally and Internationally

 

Pam’s input was quickly recognized and embraced at ARC where she became a Co-Chair of APAB. During Pam’s time with APAB her patient engagement extended to collaborating with researchers, generating letters of support, leading knowledge translation, helping create meaningful questionnaires for patients, co-authorship of some 19 publications and appearing at government policy hearings. When actively pursuing arthritis awareness and mentorship wasn’t enough, Pam joined an OMERACT (Outcome Measures in Rheumatology) working group. According to Maarten de Wit, a member of the OMERACT Executive Committee, “Pam Montie was till recently one of the key patient leaders within our organisation who has helped us significantly in shaping how patients can be involved in outcomes research”. Pam’s contributions on fatigue, rheumatoid arthritis remission and rheumatoid arthritis flare addressed areas of arthritis that were ground-breaking, and finally recognized fatigue as a major distressing symptom of arthritis.
 
In 2011, Pam then added presenting at the EULAR (European League Against Rheumatism) conference to her portfolio and continued to push the boundaries on behalf of patients globally.

 

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

Research Collaboration with Arthritis Research Canada Investigators:

  • “PRECISION: Preventing Complications from Inflammatory Skin, Joint and Bowel Conditions” successful grant application with Dr. John Esdaile 2013
  • “Effectiveness of online physical activity monitoring in rheumatoid arthritis (OPAM-RA): A new model of care”, Linda Li 2013
  • Development and Pilot Testing of the Arthritis Health Journal” – Diane Lacaille 2012
  • “A randomized controlled trial evaluating the effectiveness of the ‘Making It Work’ program at preventing work loss and improving at work productivity in employed people with inflammatory arthritis” – Diane Lacaille, Feb 2011
  • “Seeking help among Indigenous Peoples living with Inflammatory Arthritis (SHIP-IA)” – Allen Lehman, Sept 2010
  • “Living with Chronic Illness: A scoping review of meaningful activities to promote health and well-being” – Catherine Backman, April 2009
  • “Developing a Web-based version of the “Employment and Arthritis: Making It Work” program” – Diane Lacaille, Sept 2009
  • “Gaps in Care for Rheumatoid Arthritis – A Population Study” – Diane Lacaille, Feb 2008
  • “Patterns of Social Role Participation in Arthritis: Measuring What Matters in Life” – Monique Gignac, Catherine Backman, Diane Lacaille – Aug 2007
  • “Mothers with Arthritis: Experience from the Stories of motherhood” – Catherine Backman, Linda Del Fabro, Feb 2006
  • “Development and pilot testing of a novel psycho-educational intervention to improve family support for persons with rheumatoid arthritis” – Allen Lehman 2006
  • “Cardiovascular morbidity and mortality associated with the use of corticosteroids in patients with rheumatoid arthritis: A Population Study” – Antonio Avina-Zubieta, Oct 2005
  • “Tooling Up For Early Osteoarthritis: Measuring What Matters” – John Esdaile, 2004

 

Research Collaboration with OMERACT
  • OMERACT projects:Research protocol Survey: “The patient perspective in the development of patient reported outcomes in relation with OMERACT filter 2.0”, 2013
  • PRP handbook for Patient Research Partner’s (PRP) involvement in OM – Special Interest Group (SIG) 2014 – “Recommendations for involvement of Patient Research Partners in OMERACT”
  • “Collaborating with Rheumatoid Arthritis (RA) PRPs to Design Decision Aids that assure clear communication of risks of harm as well as benefit of RA treatments for confident decision-making”, Dan Furst, 2012
  • “OM Definition and Measurement of RA Remission”
    • “OM Definition and Measurement of RA Flare”
    • “OM Worker Productivity”

 

Co-Author on Peer Review Journal Publications
  1. Cheung PP, de Wit M, Bingham CO 3rd, Kirwan JR, Leong A, March LM, Montie P, Scholte-Voshaar M, Gossec L. Recommendations for the involvement of Patient Research Partners (PRP) in OMERACT Working Groups. A Report from the OMERACT 2014 Working Group on PRP. Journal of Rheumatology. 2016 Jan;43(1):187-93.
  2. Bartlett SJ, Bykerk VP, Cooksey R, Choy EH, Alten R, Christensen R, Furst DE, Guillemin F, Halls S, Hewlett S, Leong AL, Lyddiatt A, March L, Montie P, Orbai AM, Pohl C, Voshaar MS, Woodworth TG, Bingham CO 3rd. Feasibility and Domain Validation of Rheumatoid Arthritis (RA) Flare Core Domain Set: Report of the OMERACT 2014 RA Flare Group Plenary. Journal of Rheumatology. 2015 Nov;42(11):2185-9. Link to this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4747421/
  3. Bykerk VP, Lie E, Bartlett SJ, Alten R, Boonen A, Christensen R, Furst DE, Hewlett S, Leong AL, Lyddiatt A, march L, May JE, Montie P, Orbai AM, Pohl C, Scholte Voshaar M, Woodworth T, Bingham CO 3td. Choy EH. Establishing a Core Domain Set to Measure Rheumatoid Arthritis Flares: Report of the OMERACT 11 RA Flare Workshop. The Journal of Rheumatology. 2014 Apr;41(4):799-809. Link to this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4365895/
  4. Kirwan JR, Bartlett SJ, Beaton DE, Boers M, Bosworth A, Brooks PM, Choy E, de Wit M, Guillemin F, Hewlett S, Kvien TK, Landewe RB, Leong AL, Montie P et al. Updating the OMERACT filter: implications for patient-reported outcomes. Journal of Rheumatology. 2014 May;41(5):1011-5.
  5. Tang K, Boonen A, Verstappen SM, Escorpizo R, Luime JJ, Lacaille D, Fautrel B, Bosworth A, Cifaldi M, Gignac MA, Hofstetter C, Leong A, Montie P, Petersson IF, Purcaru O, Bombardier C, Tugwell PS, Beaton DE. Worker Productivity Outcome Measures: OMERACT filter evidence and agenda for future research. The Journal of Rheumatology. 2014 Jan;41(1):165-76.
  6. Bingham Co 3rd, Alten R, Bartlett SJ, Bykerk VP, Brooks PM, Choy E, Christensen R, Furst De, Hewlett SE, Leong A, May JE, Montie P, Pohl C, Sanderson TC, Strand V, Woodworth TG, OMERACT RA Flare Definition Working Group. Identifying Preliminary Domains to Detect and Measure Rheumatoid Arthritis Flares: Report of the OMERACT 10 RA Flare Workshop. Journal of Rheumatology. 2011 Aug; 38(8):1751-1758.
  7. Alten R, Pohl C, Choy EH, Christensen R, Furst De, Hewlett SE, Leong A, May JE, Sanderson TC, Strand V, Woodworth TG, Bingham CO 3rd, Montie P, OMERACT RA Flare Definition Working Group. Developing a construct to evaluate flares in rheumatoid arthritis: a conceptual report of the OMERACT RA Flare Definition Working Group. Journal of Rheumatology 2011 Aug;38(8):1745-50.
  8. Kirwan JR, Fries JF, Hewlett SE, Osborne RH, Newman S, Ciciriello S, van de Laar MA, Dures E, Minnock P, Heiberg T, Sanderson TC, Flurey CA, Leong AL., Montie P, Richards P. Patient Perspective Workshop: Moving towards OMERACT Guidelines for Choosing or Developing Instruments to Measure Patient-reported Outcomes. The Journal of Rheumatology. 2011 Aug;38(8)1711-1715.
  9. Felson DT, Smolen JS, Wells G, Zhang B, van Tuyl LH, Funovits J, Alwtaha D, Allaart CF, Bathon J, Bombardieri S, Brooks P, Brown A, Matucci-Cerinic M, Choi H, Montie P et al. American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) Provisional Definition of Remission in Rheumatoid Arthritis for Clinical Trials. Annals of the Rheumatic Diseases. 2011 Mar;70(3):404-13.
  10. Felson DT, Smolen JS, Wells G, Zhang B, van Tuyl LH, Funovits J, Alwtaha D, Allaart CF, Bathon J, Bombardieri S, Brooks P, Brown A, Matucci-Cerinic M, Choi H, Montie P et al. American College of Rheumatology/European League Against Rheumatism (ACR/EULAR) Provisional Definition of Remission in Rheumatoid Arthritis for Clinical Trials. Arthritis & Rheumatology. 2011 Mar;63(3):573-86. Link to this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3115717/
  11. Kirwan JR, Newman S, Tugwell P, Wells G, Hewlett S, Idzera L, Laslo B, March L, Minnock P, Montie P, Nicklin J, Radar T, Richards P, Suarez-Almazor M, Tanjong-Ghogomu E, Ueffing E, Welch V. Progress on Incorporating the Patient Perspective in Outcome Assessment in Rheumatology and the Emergence of Life Impact Measures at OMERACT 9. Journal of Rheumatology 2009 Sep;36(9):2071-2076.
  12. Gignac MA, Backman CL, Davis AM, Lacaille D, Mattison CA, Montie P, Badley EM. Journal of Rheumatology. 2008 Aug;35(8):1655-63.
  13. Backman CL, Smith Ldel F, Smith S, Montie P, Suto M. Experiences of mothers living with inflammatory arthritis. Arthritis & Rheumatology. 2007 Apr 15;57(3):381-8. Link to this article: http://onlinelibrary.wiley.com/doi/10.1002/art.22609/epdf

 

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