Accepted for/Published in: JMIR Research Protocols
Date Submitted: Oct 7, 2022
Date Accepted: Jan 31, 2023
Digital outcome measurement to improve care for patients with immune-mediated inflammatory diseases: a study protocol for the IMID-registry
ABSTRACT
Background:
Immune-mediated inflammatory diseases (IMIDs) have a large impact on patients’ lives. To reduce disease burden, optimization of care based provider- and patient-reported outcomes is a key factor. This could be achieved by aligning the healthcare delivery system with the principles of value-based healthcare (VBHC).
Objective:
We implemented the IMID-registry: A digital system for routine outcome measurement to facilitate VBHC in order to improve care for patients with IMIDs.
Methods:
The IMID-registry is a longitudinal observational prospective cohort study within the departments of rheumatology, gastroenterology, dermatology, internal medicine and immunology, clinical pharmacy and outpatient pharmacy of the Erasmus MC, the Netherlands. Patients with the following diseases are eligible for inclusion: inflammatory arthritis (IA), inflammatory bowel disease (IBD), atopic dermatitis, psoriasis, uveitis, Behçet’s disease, sarcoidosis, and systemic vasculitis. General and disease-specific questionnaires, including adherence to medication, side effects, quality of life, work productivity, disease damage and disease activity are collected from patients and providers at fixed intervals before and during outpatient clinic visits. These data are combined with clinical and administrative data to enable a complete overview of health outcomes. Data is collected and visualized through a dashboard which is linked to the patients’ electronic health record.
Results:
The IMID-registry is an ongoing cohort with no end date. Inclusion started in April 2018. From start until September 2022, 1417 patients have been included from the participating departments. The mean age at inclusion was 45 years and 55% of the patient population is female.
Conclusions:
The IMID-registry is an outcome-measurement system that collects provider- and patient-reported outcomes. It could facilitate implementation of VHBC for patients with IMIDs, improve patient care on an individual level and collects repeatedly measured outcomes from a real-world cohort for research purposes. Clinical Trial: n.a.
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