Measuring what Matters in Rheumatology in Alberta to Improve Care Delivery
Scientific study title:
Implementation of the Alberta Rheumatology Provincial Learning Health System
Principal Investigator:
Claire Barber, MD, PhD, FRCPC, Associate Professor, Division of Rheumatology, Department of Medicine and Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Research Scientist, Arthritis Research Canada
Research Scientist, Arthritis Research Canada
Steven Katz MD, Associate Professor, Department of Medicine, Division of Rheumatology, University of Alberta
Co Investigators:
Cheryl Barnabe – MD, MSc, FRCPC, Senior Scientist, Arthritis Research Canada
Associate Professor, Division of Rheumatology, Department of Medicine and Department of Community Health Sciences, Cumming School of Medicine, University of Calgary
Arthur J.E. Child Chair in Rheumatology Research
Glen Hazlewood, MD, PhD, FRCPC, Assistant Professor, Division of Rheumatology, Department of Medicine, Cumming School of Medicine, University of Calgary; Research Scientist, Arthritis Research Canada
Diane Lacaille, MD, MHSc, FRCPC, Scientific Director, Arthritis Research Canada; Mary Pack Chair in Arthritis Research; Professor, University of British Columbia, Department of Medicine, Division of Rheumatology
Allyson Jones, PT, PhD, Professor, Department of Physical Therapy, Faculty of Rehabilitation, University of Alberta; Adjunct Professor, School of Public Health, University of Alberta; Affiliate Scientist, Rehabilitation Sciences, Arthritis Research Canada
Dr. A. Ambasta, Dr. N. Gakhal, Dr. A. Kania-Richmond , Mrs. J. Robert, Dr. A. Steiman, Dr. J. Widdifield, Dr. T. Williamson, Dr. E. Yacyshyn
Patient Partner:
Ms. Y. Wallace, Arthritis Research Canada Arthritis Patient Advisory Board Member
Study Start Date:
September 2023
Study End Date:
March 2027
Why do this research?
Rheumatoid arthritis (RA) is a type of arthritis caused by the body attacking itself. It’s quite common, affecting about 1 in 100 people. People with RA often have pain and swelling in their joints, which can make it hard to do things they enjoy. If left untreated, RA can cause disability, which means it’s hard to do everyday activities. It can also lead to expensive surgeries to replace damaged joints, can increase the risk of heart and lung problems, and can even lead to death. But with the right treatment early on, people can live longer and have a better quality of life.
Our group has spent ten years collaborating with the national rheumatology community to create ways to measure good healthcare for people with RA. One of the main difficulties in measuring how patients are doing is the amount of information available. However, in Alberta, a new electronic health record is being set up. This is a great chance to use the new system to measure how care is given and how patients are doing across the province. This could also help us create a “learning health system” where we learn from the data collected in everyday patient visits and make sure the care provided is top-notch according to established quality measures.
What will be done?
This project will develop the ‘Alberta Rheumatology Learning Health System’, a tool designed to improve rheumatology care. The tool will improve care by making sure the care provided meets the highest standards. To develop the Alberta Rheumatology Learning Health System, the project will follow these steps:
- Bring together individuals living with rheumatoid arthritis, healthcare providers, and health system leaders to select health outcome measures from a national framework.
- Develop strategies with data experts to track these measures over time using health record data.
- Work with experts to find the best ways to give feedback to healthcare providers and leaders to improve care and outcomes.
- Share findings with regional and national organizations to contribute to quality improvement efforts nationally.
Who is involved?
Individuals living with rheumatoid arthritis, healthcare providers, and health system leaders will work together to guide the research and share findings. Regional and national rheumatology organizations will also partner with the researchers to share findings and help improve healthcare processes.
How are Equity, Diversity and Inclusion addressed or taken into consideration?
This project will consider the impact of sex, gender, race, and ethnicity throughout all its phases. To develop the learning health system, we will intentionally select patients, health care providers and experts from a diverse background to provide their perspectives on the measurement framework. The measures of high-standard care will also be evaluated and selected based on the overarching theme of equity as stated in the national objectives for quality improvement in RA.
Funding Agency
Canadian Institutes of Health Research
How can people get involved?
If you are an Alberta resident and interested in getting involved please reach out to racheal.githumbi@ucalgary.ca.
