Data access has been approved for a project which will link administrative health data with researcher-collected survey data, in an attempt to quantify just how much systemic autoimmune rheumatic diseases cost the Canadian economy.
Rheumatic illnesses impart a great economic burden in Canada and world-wide. Systemic autoimmune rheumatic diseases (SARDs) includes lupus and related disorders, and though relatively rare, they form an important part of this burden. They are complex diseases that often require specialty care and complicated treatment. SARDs can also limit patients' participation in paid and unpaid activities, and these productivity losses negatively impact patients, employers, and the larger economy. However, we know little about the true costs of these productivity losses and high levels of healthcare resource use in patients with SARDs.
This project, led by Principal Investigator Dr. Antonio Aviña-Zubieta, and funded by the former Canadian Arthritis Network (CAN) and the BC Lupus Society, is the first population-based study designed to identify long-term healthcare needs, costs, and gaps in care for those with SARDs.
“Epidemiologic data on SARDs is scarce,” says Natalie McCormick, who will be working on the project as part of her PhD studies in the Faculty of Pharmaceutical Sciences at the University of British Columbia and Arthritis Research Canada. “In particular, contemporary population estimates for disease burden are limited. Our hypothesis is that direct medical costs of SARDs are high and underappreciated as important drivers of health care costs. We intend to establish health resource use and direct medical costs in SARDs cases compared with the general population.”
McCormick will use administrative data to estimate the direct medical costs of more than 20,000 incident SARD cases in BC. “Data that are unavailable at the population level, including body mass index (BMI), smoking history, educational attainment, productivity losses, and out-of-pocket costs will be collected from a sample of the SARDs cohort and a control sample. This will allow us to estimate the indirect costs of SARDs, and, in combination with administrative data, identify significant drivers of all costs.”
The results of the study will help clinicians and policymakers anticipate future healthcare needs, allocate resources efficiently, and potentially increase the productivity of SARDs patients with cost-savings implications for patients, government, and the Canadian economy.
PopData will link data from the BC Ministry of Health, the BC Vital Statistics Agency, the BC Cancer Agency, Statistics Canada and researcher-collected data for the project.