Alberta Rheumatology Learning Health System
Summary
Rheumatoid arthritis (RA) is the most common autoimmune inflammatory arthritis. It impacts approximately one in every 100 individuals. Individuals with RA experience joint pain and swelling. This can have a major impact on quality of life. If we don't treat RA , it can cause pain and disability. RA is also associated with a higher risk of heart and lung disease, and even premature death. With early and appropriate treatment, we can improve patient outcomes, including life expectancy.
We are working to measure the quality of healthcare for people with RA. One of the major challenges in measuring patient outcomes is available data. In Alberta, a provincial information system called Connect Care is being implemented. This system can help us measure how we deliver care, and patient outcomes. This will support a “learning health system”. Learning health systems use healthcare data collected in day-to-day healthcare visits. We can analyze this data to generate reports. These reports help ensure that the care provided meets the highest standards.
We propose to develop an Alberta Rheumatology Learning Health System. To do this, we will gather opinions from people with RA, healthcare providers and leaders. They will help us develop a set of quality measures. We will then work with data experts to track the selected quality measures over time. We will feed this information back to healthcare providers and health system leaders. We will use this information to improve healthcare delivery, and patient outcomes
We will share our findings with regional and national organizations. This will help us contribute to national quality improvement efforts.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 18 to 100
Inclusion criteria:
We will be recruiting patient research partners to participate in an advisory group for the project.
Individuals who are eligible to participate in the advisory group must meet the following criteria:
1. Have a diagnosis of rheumatoid arthritis.
2. Reside in the province of Alberta.
3. Be over the age of 18.
Exclusion criteria:
Those not eligible for the study include:
1. Individuals with a diagnosis of arthritis other than rheumatoid arthritis
2. Individuals residing outside the province of Alberta
3. Individuals younger than 18 years old
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
Access to Information page.
Additional information
Contact information
To learn more about the project individuals may contact a member of the study team.
Principal investigator:
Claire Barber
Clinical trial:
No
REB-ID:
REB23-0336