Turning Data into Action: Inside Alberta's Rheumatology Learning Health System

Rheumatology care in Alberta is undergoing a quiet transformation, powered by data that listens.

Dr. Claire Barber – rheumatologist and associate professor in the departments of Community Health Sciences and Medicine at the Cumming School of Medicine (CSM) – is reimagining rheumatology care through the lens of a Learning Health System that learns from every patient, every visit and every outcome.

Defining quality care

Starting in 2017, Dr. Barber co-led a national research initiative to improve the quality of care for people living with rheumatoid arthritis. Recognizing that care quality was not routinely monitored in Canada, the project aimed to reduce variation in treatment and outcomes by creating a structured, partner-informed framework for performance measurement. Through a series of focus groups and interviews with patients, clinicians and health system leaders, the team identified seven key domains of high-quality care, including early access, evidence-based treatment, patient engagement and equity. This collaborative process culminated in the creation of the Rheumatoid Arthritis (RA) Quality Improvement Framework, which included 21 validated measures spanning access, care processes, patient outcomes and shared decision-making.

More recently, Dr. Barber led the creation of a national patient-centred quality measurement framework for rheumatoid arthritis, integrating both outcome and process measures to support holistic care.

Building dashboards that drive action

Once the team had defined what high-quality rheumatology care should look like, the next challenge was making that vision measurable and actionable. In collaboration with Health Shared Services’ analytics group, Dr. Barber and her team developed real-time, continuous reporting dashboards using Tableau, built on data from Connect Care, Alberta’s provincial electronic medical record system.

The dashboards aggregate patient data and help answer critical questions: How long does it take to get a diagnosis? Are patients staying connected to care? Are they following the recommended treatment schedule?

The new analytics tools don’t just look backward: they help care teams act in the moment. The system can automatically flag patients who are overdue for lab work or follow-up appointments. This reduces the risk of missed tests or delayed treatment and maximizes adherence to medications without the need for manual chart reviews, streamlining care.

These dashboards help rheumatology teams spot and address small cracks in patient care before they become wide gaps.

Capturing the patient experience for shared decision-making

One of the most meaningful shifts in this work has been how patients share their experiences of disease. Instead of relying on paper forms that often disappeared into file folders, patients now enter their health assessments directly into Connect Care. Their insights appear instantly on the clinician’s screen, offering a more complete picture of disease activity and how arthritis affects daily function and overall wellbeing. For the first time, clinicians can view process-linked composite disease activity information, combining lab results, physician assessments and the patient’s own evaluation of their condition. This includes patient-reported measures of physical function, which directly capture how arthritis affects daily life and overall wellbeing. These outcome-based disease activity measures are still being actively refined and validated for full operational use.

“Collecting this data in real time means clinicians and patients can make decisions together based on current information, not just memory or impression,” says Dr. Barber.

By integrating patient-reported data into clinical workflows, the patient voice is brought into the forefront, supporting shared decision-making and ensuring care is guided by both clinical evidence and lived experience.

Caring for providers

The same data is being used to support the people who deliver care. By analysing call volume data across Alberta’s five rheumatology sites, the team discovered serious workload imbalances. They used that evidence to redesign the on-call schedule, helping reduce burnout and improve safety for both providers and patients. Important gaps remain, particularly in consistent documentation of disease activity, which limits population-level outcome analysis. Dr. Barber’s team is working to understand these challenges from clinicians’ perspectives and to strengthen skills needed for participation in learning health systems. Some dashboard elements are part of ongoing peer-reviewed publications, so public sharing of visual materials is being carefully staged.

What’s next

Timely and accurate triage is essential for early diagnosis and treatment of rheumatic diseases, with close to 4,000 patients on the wait list in Calgary and 500 to 800 new referrals weekly, the centralized triage process is overwhelmed, inconsistent and lacks standardized referral forms. Many referrals contain minimal clinical information, making accurate prioritization difficult and resource intensive. To address this, Dr. Barber’s team plans to evaluate current triage workflows and engage clinicians and patient partners in co-designing an electronic tool for the collection of patient-reported outcomes to support triage of new referrals. This work is currently paused due to system-level capacity pressures and funding limitations.

Ultimately, this work aims to lay the research foundation for future predictive algorithms that combine patient-reported data with clinical information to support more accurate, equitable and scalable triage across Alberta.

The heart of the matter

Key contributors to the development of the rheumatology dashboards include Vera Hill and Kevin Lonergan (Alberta Health Services), and Dr. Steven Katz, former division lead of rheumatology in Edmonton and co-principal investigator on this work.

This work began with co-designed efforts to define what quality care in rheumatology should look like and has evolved into a data-driven system that continuously measures, learns and improves. By turning metrics into meaningful insights, this work is a powerful example of the quintuple aim in action by enhancing the patient and provider experience, reducing inefficiencies and driving better health outcomes. Most importantly, the data is being used to uncover and address inequities in care, ensuring that appropriate care can reach every patient.