Equity, Diversity, and Inclusion in Rheumatology Research

 

Scientific study title:

Towards Addressing Equity Considerations in Research and Care of Patients with Inflammatory Arthritis (ACCESS)

 

Study Start Date:

June 2022

Study End Date:

May 2023

 

Why Did We Do This Research?

We saw a lack of diverse groups studied in rheumatology research. We did this work to emphasize that rheumatology research should include patients who represent factors often called determinants of health inequities e.g., gender, sex, race, education. This is especially true in conditions like rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), and juvenile idiopathic arthritis (JIA). These issues can contribute to differences in treatment leading to unfairness in health results. By looking at these differences, researchers can improve what they learn because a greater variety of people will be included. Our work may help make the results of research apply to more patients and improve the impact of research on healthcare.

 

What Did We Do?

Our team did three literature reviews for our scoping review. We wanted to see how researchers in the articles we found described issues connected to differences in care and treatment. We picked research articles published between 1990 and 2023. We looked at the ways researchers described patients in Canadian randomized controlled trials (the most influential type of research). These are the types of arthritis we looked at.

  1. Juvenile Idiopathic Arthritis (JIA)
  2. Rheumatoid Arthritis (RA)
  3. Systemic Lupus Erythematosus (SLE)

We searched various databases for articles.

 

What Were the Key Findings?

The literature reviews showed us that in research studies in Canada, we don’t see many details about what the participants are like. These details are lacking particularly in randomized controlled trials on JIA, RA, and SLE. Health inequities make a difference to care results. We did not see enough details in the studies we found about why different groups might have different results.

In most of these studies, we found only gender, sex, and age listed.

In the 3 literature reviews, we found out:

1. Studies published on JIA: (5 studies included).

We saw sex and age reported in all studies. Race, social and economic status, education, and relationships were each reported once in three studies.

2. Studies published on RA: (42 studies included)

We saw sex and age reported in 41 studies. Other determinants reported were race, education, social and economic status, and occupation.

3. Studies published on SLE: (6 studies included)

We saw sex and age reported in all studies. We also noted: race, social capital, places people live, social and economic status, occupation, and education.

The trials that we found from Canada for JIA, RA, and SLE are behind in reporting factors that determine health. There is not enough representation in participants of trials. We see a need for a new way to capture more factors leading to health unfairness in JIA, RA, and SLE patient populations.

Infographics 

Click to enlarge images.

Juvenile Idiopathic Arthritis

Lupus

Rheumatoid Arthritis

The Research Team

 

Principal Investigators

  • Mary De Vera, PhD, Senior Scientist, Arthritis Research Canada (University of British Columbia)
  • Megan Thomas, PhD Candidate, Arthritis Research Canada Trainee (University of British Columbia)

 

Co-Investigators

  • Mark Harrison, PhD, Affiliate Scientist, Arthritis Research Canada (University of British Columbia)

 

 

Funding Agency

The Canadian Institutes of Health Research (CIHR)

 

Additional Project Investigators

Niloofar Gheshlaghi (University of British Columbia)
John Esdaile, MD, MPH, Scientific Director Emeritus, Arthritis Research Canada (University of British Columbia)
Antonio Avina-Zubieta, MD, PhD, Senior Scientist, Arthritis Research Canada (University of British Columbia)
Cheryl Barnabe, MD, MSc, FRCPC, Senior Scientist, Arthritis Research Canada (University of Calgary)

 

Patient Partners

Natasha Trehan, Arthritis Patient Advisory Board of Arthritis Research Canada

Anna Samson

Michael Kuluva

 

 

Related Publications

  • Thomas, M., Harrison, M., & De Vera, M. A. (2022). Reporting of Determinants of Health Inequities in Rheumatoid Arthritis Randomized Controlled Trials in Canada: A Scoping Review. Arthritis care & research, 75(1), 101–114. https://doi.org/10.1002/acr.24978.
  • Gheshlaghi, N., Thomas, M., Trehan, N., Harrison, M., & De Vera, M. A. (2023). Reporting of determinants of health inequities and participant characteristics in randomized controlled trials of juvenile idiopathic arthritis in Canada: a scoping review. Pediatric rheumatology online journal, 21(1), 134. https://doi.org/10.1186/s12969-023-00917-5
  • Thomas, M., Verma, V., Gheshlaghi, N., Esdaile, J., Avina-Zubieta, A., Barnabe, C., Harrison, M., De Vera, MA.  Reporting of determinants of health inequities and participant characteristics in randomized controlled trials of systemic lupus erythematosus in Canada: A scoping review. Lupus. 2024 (Accepted).