Donate Now
  • Research Ongoing
Connecting Voices for Equitable Rheumatoid Arthritis Care Access
View in English
Voir en francais
Connecting Voices-PLS-715 x 405
Scientific Study Title:
Connecting Voices, Bridging Care: A Virtual Knowledge Mobilization Initiative for Equitable Rheumatoid Arthritis Care Access
Start Date:
  • May 2026
End Date:
  • May 2027
Research Category
Tags
kE8W2gampckoWYtVNEM_o9KQ9-4DqzoSa386VzQcf8I
Allyson Jones
Affiliate Scientist, Rehabilitation Sciences, PT, PhD
j3f8GwnMDZG3_yFeDobeQbVo7Wlfp9eqBh_7jyg5hzI
Claire Barber
Research Scientist, Rheumatology, MD, PhD, FRCPC
kbBRaho7L1jHqfjFUQNgLWdec-aSQOi_1mzAMOeT6RU
Diane Lacaille
MDCM, MHSc, FRCPC, Scientific Director, Rheumatology
vxEuJYtm6XTOQMOuMHXzykwHmOBgoMi1Myoi13chK-Y
Alison Hoens
Knowledge Broker, MSc, BScPT
OqqQYqpPhoOjdBygrRWOgrDsT17AhbcDR3dezwydbDg
Monika Szpunar
Knowledge Mobilization Associate, MSc, PhD

Ready to Participate?

Life-changing arthritis research is only possible with your help!
Participate Now

Why do this research?

Reason For Research

Many people living in Canada with rheumatoid arthritis, especially those living in rural areas, immigrants, people with lower incomes, LGBTQ+ individuals, French speakers outside Quebec, and people with mobility challenges, face significant barriers getting from their first symptoms to seeing a specialist. These delays can lead to irreversible joint damage and reduced quality of life.

Methodology

Execution of Research

We will bring together people with rheumatoid arthritis from underserved communities (rural areas, immigrants, people with lower incomes, LGBTQ+ individuals, French speakers outside Quebec) with healthcare providers, researchers, and health system leaders through online workshops. Together, we will create visual “journey maps” that show what happens from when someone first notices symptoms through getting diagnosed and starting treatment. These maps will highlight where the largest barriers exist and what resources are needed.

People with arthritis will lead these sessions and will share their experiences and identifying what support they needed at each stage. These journey maps will then provide immediate practical tools for healthcare providers to better support patients and help community organizations to assist people seeking care. The maps will also identify specific priority areas for future projects that change how the healthcare system works, catalyzing real-world improvements to reduce barriers and inequities in arthritis care access.

Who is involved?

Involvement

This project brings together people living with rheumatoid arthritis from underserved communities, health and social care professionals, researchers, and community partner organizations. People with rheumatoid arthritis serve as co-researchers, not just participants, and are supported by two experienced Patient Research Partner Mentors with lived experience of rheumatoid arthritis.

Findings & Next Steps

People with rheumatoid arthritis have been involved since the design stage and will lead this project throughout. Two Patient Research Partner Mentors with lived experience reviewed recruitment materials before ethics submission and will co-facilitate sessions and mentor incoming Patient Research Partners. The 15–18 Patient Research Partners recruited will lead the journey mapping sessions, drawing directly on their own care experiences. Patient engagement is formally evaluated at each phase using a validated scale (PEIRS-22).

Equity, Diversity, and Inclusion

The six target communities were chosen because they face the greatest barriers to rheumatoid arthritis care and are least represented in research. Many participants will belong to more than one underserved group, and the journey mapping process is designed to capture how overlapping identities shape care experiences. All sessions are virtual, with interpretation, cultural support, technology loans, and honoraria available to remove barriers to participation. Patient-facing materials are reviewed by people with lived experience before use.

External Partners & Contacts

Principal Investigators:

Allyson Jones, PT, PhD, Affiliate Scientist, Arthritis Research Canada (University of Alberta)

Claire Barber, MD, PhD, FRCPC, Research Scientist, Rheumatology, Arthritis Research Canada (University of Calgary)

Neil Drummond, PhD (University of Alberta)

Co-investigators:

Sharon Koehn, PhD, Project Coordinator (Simon Fraser University)

Diane Lacaille, MDCM, MHSc, FRCPC, Scientific Director, Arthritis Research Canada (University of British Columbia)

Hongmei Tong MSW PhD, (MacEwan University)

Denise Cloutier PhD (University of Victoria)

Doug Klein MD MSc FCFP  (University of Alberta)

Knowledge Users:

Ehren Ackerman, Patient Research Partner Mentor

Carolyn Goard, PhD, Arthritis Society Canada

Jennifer Lorca, Patient Research Partner Mentor

Laurie Proulx, Canadian Arthritis Patient Alliance

Monika Szpunar, MSc, PhD, Knowledge Mobilization Associate, Arthritis Research Canada

Collaborators:

Lara Nixon, MD (University of Calgary)

Lisa Jasper, PT, PhD (University of Alberta)

Partner Agencies:

  • ASSIST Community Services Centre
  • Centre for Newcomers
  • Calgary Outlink
  • Pride Centre of Edmonton

Related Research

Connecting Voices-PLS-715 x 405

Connecting Voices for Equitable Rheumatoid Arthritis Care Access

Read More
New Model of At-Home Follow-Up Care_PLS

A New Model of At-Home Follow-Up Care for Rheumatoid Arthritis

Read More
Kinesiologists-and-Exercise-Physiologists-PLS-Feature-Image-425x296-1

Preparing kinesiologists and exercise physiologists: what does this mean for arthritis care?

Read More
Ozempic-PLS-Feature-Image-425x296-1

Are medications like Ozempic safe and effective for people with inflammatory arthritis and type 2 diabetes?

Read More
Research-Stream-AI-Study_425x296

Using Artificial Intelligence to Streamline Research on Rheumatoid Arthritis Treatments

Read More
2026-Studies-to-Watch-Decision-Aid

Evaluating a Decision Aid for Tapering Biologic Medications in Rheumatoid Arthritis

Read More