Arthritis Care for Indigenous Populations
Study Title: The Economic Challenges of SLE: Measuring and Mitigating the Impact
Principal Investigator: Cheryl Barnabe, MD, MSc, FRCPC, Associate Professor, Division of Rheumatology, Department of Medicine, University of Calgary, Research Scientist, Arthritis Research Canada
Study Start Date: July 2015 | End Date: June 2020
Why do this research?
Arthritis is the most common chronic disease in Indigenous populations, particularly severe inflammatory arthritis. The main goal of my program of research is to describe and find solutions to the inequalities in inflammatory arthritis care and outcomes in Canada’s Indigenous populations.
The objectives for my program of research are to:
1) Characterize the impact of inflammatory arthritis on mortality, health services use, and societal cost in the Indigenous populations of Canada;
2) Determine Indigenous patient preferences for inflammatory arthritis care and treatment;
3) Develop tools to assist Indigenous patients and their health care provider to agree on treatment choices, expectations and values when discussing the proven treatment options for inflammatory arthritis therapy.
What will be done?
The research program uses a variety of research tools and methods. In partnership with the Alberta First Nations Information Governance Centre, large healthcare databases will be analyzed to determine health services use for inflammatory arthritis conditions. Qualitative research (behaviours and perceptions) and discrete choice experiments will be used to assess preferences for treatment. Decision tools and shared decision making approaches will be tested for their ability to improve the discussion around treatment options.
Who is involved?
Our Indigenous partners include the Alberta First Nations Information Governance Centre, the Elbow River Healing Lodge, and the Siksika Nation.
How do people get involved?
Formal partnership agreements with Indigenous communities specify recruitment to clinical studies.
Who is on the research team?
Sasha Bernatsky, MD, FRCPC, PhD
Assistant Professor, Department of Medicine,
Research Institute of the McGill University Health Centre
Vivian Bykerk, MD, FRCPC
Professor & Scientific Programme Leader
Associate Professor of Medicine, Weill Cornell Medical
Lynden Crowshoe, MD
Associate Professor of Medicine, University of Calgary
Glen Hazlewood MD, PhD, FRCPC
Assistant Professor, Division of Rheumatology, Department of Medicine, University of Calgary
Brenda Hemmelgarn, PhD
Professor of Medicine and Community Health Sciences, University of Calgary
Janet Jull, OT, PhD
University of Ottawa
Diane Lacaille, MD, MHSc, FRCPC
Professor of Medicine, University of British Columbia,
Mary Pack Chair in Rheumatology,
Senior Scientist, Arthritis Research Canada
Professor of Medicine, University of Manitoba
Walter Maksymowych, MD
Professor of Medicine, University of Alberta
Deborah Marshall, PhD, MHSA
Professor, Department of Community Health Sciences, University of Calgary,
Senior Scientist, Arthritis Research Canada
Janet Smylie, MD, FCFP, MPH
Associate Professor, University of Toronto,
Dalla Lana School of Public Health, Director, Well Living House, St. Michael’s Hospital (Toronto)
Wilfreda Thurston, PhD
Professor Department of Community Health Sciences, University of Calgary
Who is funding the research?
The Canadian Institutes for Health Research
- Hurd K, Barnabe C. Systematic Review of Rheumatic Disease Phenotypes and Outcomes in the Indigenous Populations of Canada, the United States, Australia and New Zealand. Rheumatology International 2016; in press.
- Barnabe C, Lockerbie S, Erasmus E, Crowshoe L. Outcomes of Facilitated Access to an Integrated Arthritis Model of Care for an Urban Aboriginal Population. Canadian Family Physician 2016; in press.
- McDougall C, Hurd K, Barnabe C. Systematic Review of Rheumatic Disease Epidemiology in the Indigenous Populations of Canada, the United States, Australia and New Zealand. Seminars in Arthritis and Rheumatism 2016, Nov 1. Pii:S0049-0172(16)30168-8. Doi: 10.1016/j.semarthrit.2016.10.010 [epub ahead of print].
- Loyola-Sanchez A, Hurd K, Barnabe C. Healthcare Utilization for Arthritis by Indigenous Populations of Australia, Canada, New Zealand and the United States: A Systematic Review. Seminars in Arthritis and Rheumatism 2016, in press.
- Barnabe C, Healy B, Portolesi A, Kaplan GG, Hemmelgarn BR, Weaselhead C. Claims for Disease-Modifying Therapy by Alberta First Nations. BMC Health Services Research 2016 Aug 24;16(1):430. Doi: 10.1186/s12913-016-1685-y.
- Barnabe C, Jones CA, Bernatsky S, Peschken CA, Voaklander D, Homik J, Crowshoe LF, Esdaile JE, El-Gabalawy H, Hemmelgarn B. Inflammatory Arthritis Prevalence and Health Services Use in the First Nations Population of Alberta, Canada. Arthritis Care and Research 2016 Jun 22. Doi: 10.1002/acr.22959.