Improving the Quality of Care for Adults With Inflammatory Bowel Disease

To demonstrate the impact of an Adult Inflammatory Bowel Disease (IBD) Learning Health System
approach the study collaborators will design, build, implement, and evaluate in up to 30 IBD
care sites the the following four key components of the IBD Learning Health System: 1) a
Health Information Technology (HIT) environment that can "feed-forward" PROs and clinical
data to be used at the point of care and integrated into a registry (IBD Plexus); 2)
decision-support dashboards for use by patients and clinicians in real time to coproduce
care; 3) meaningful reports for patients and clinicians; and 4) multi-stakeholder
collaborative networks for improvement and research. The Learning Health System model also
includes one more additional component that is desired, yet is outside the scope of this
project; 5) patient facilitated networks that connect patients at their convenience.

Prior work from Sweden and the US show that successful uptake of the model can offer
important benefits. Patients will be able to use web-based tools to monitor their health and
manage their care, securely share data with clinicians in a timely manner, visualize outcomes
that matter to them, and compare their results to other people. Clinicians will have new
information that can improve their ability to track patient outcomes and costs over time; use
PRO data to support pre-visit planning, shared decision-making at the point of care, and
post-visit monitoring; and receive comparative performance reports to support quality
improvement, public reporting, and professional development. Researchers will benefit by
having PROs and cost data added to data registries to support clinical, translational, and
comparative effectiveness research.

Study collaborators will evaluate and determine the technological, social/community, and
policy roadmap that will allow the implementation of such a system at scale across multiple,
diverse clinical settings. Understanding these factors will pave the way for broad uptake of
a feed-forward coproduction information systems that supports coproduction of optimal health
and high value care for IBD patients.

Inclusion Criteria:

- 18 years of age or older

- Diagnosis of Crohn's disease or ulcerative colitis or IBD undetermined

- Accept the terms and conditions of Informed Consent

- Affiliated with a participating IBD Care site

Exclusion Criteria: