Improving equity in research on persons with inflammatory arthritis
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Scientific Study Title:
Towards Addressing Equity Considerations in Research on Patients with Inflammatory Arthritis (ACCESS)
Start Date:
End Date:
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Megan Thomas
BSc, MSc, PhD Candidate
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Mary De Vera
MSc, PhD, Associate Director of Training, Senior Scientist, Pharmacoepidemiology
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Mark Harrison
Affiliate Scientist, Health Economics, MSc, PhD

Ready to Participate?

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

Why do this research?

Reason For Research

Inflammatory arthritis (IA) affects many people in Canada and usually requires lifelong treatment and access to regular care. We know that people can have different health outcomes based upon several factors. Differences include race, gender identity, age, location, education or other factors. To solve this issue, we need to understand what risk factors exist for IA patients when accessing care. However, there is usually less representation and diversity in the people who participate in clinical trials for inflammatory arthritis, which can limit our ability to provide personalized care. It is important to look at this topic, because we need to understand how health care services may be disadvantaging or harming certain people. We need to work with patients to figure out how to recruit people into more studies addressing this topic.

Methodology

Execution of Research

By including a more diverse group of IA patients in research studies we will ensure effective health outcomes are inclusive of all factors, such as: race, age, identified gender, and socio-economic factors (location, education, personal finances, access to medical/health/well-being resources, etc.)

We will:

  1. Work with 4-6 patient advisors,
  2. Identify diversity factors to consider when recruiting IA patients for studies,
  3. Review research already completed and determine how to recruit patients with diversity factors to ensure equity,
  4. Meet with patients, rheumatologists and researchers in IA to create strategies on how to recruit IA patients for future research considering diversity and equity factors,
  5. Identify how access to research for IA patients can be all inclusive

Who is involved?

Involvement

Under the supervision of Dr. Mary De Vera and Dr. Mark Harrison, Megan Thomas will interview researchers, and conduct focus groups with patients to explore their thoughts on equity, diversity, and inclusion in research. They will also ask for feedback on a survey that will ask about patient factors and patient outcomes. Next, she will use our findings to get patients in Canada to participate in the survey. She will then analyze the results using statistical methods to see if there are any links between patient factors and health outcomes.

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