Crohn's Disease, Inflammatory Bowel Diseases, Ulcerative Colitis
Conditions
Brief summary
Innovative programs exist that suggest that care for people with chronic conditions is optimized when patients and providers have the information they need at the point of care and over time, to engage in shared planning and execution of treatment goals and care plans. This project aims to build an Inflammatory Bowel Disease Learning Health System, a shared information environment, that highlights collaboration among patients, clinicians and care team members, and researchers; for effective use of data for guiding care, value, improvement, and research.
Detailed description
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 90 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 Patient Reported Outcomes (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. 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.
Interventions
None listed
Sponsors
Crohn's and Colitis Foundation
Cedars-Sinai Medical Center
Dartmouth College
Dartmouth-Hitchcock Medical Center
Study design
Observational model
OTHER
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to 99 Years
Healthy volunteers
No
Inclusion criteria
* 18 years of age or older * Diagnosis of Crohn's disease or ulcerative colitis or IBD unclassified * Accept the terms and conditions of Informed Consent and Authorization * Affiliated with a participating IBD Qorus site
Exclusion criteria
* Inability to provide informed consent * Study key personnel cannot enroll as a study participant
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Number of patients enrolled | annually, up to 5 years | count of number of patients consented |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Proportion of patients on steroids | annually, up to 5 years | assessed by patient report |
| Proportion of patients admitted into the Emergency Room | annually, up to 5 years | assessed by patient report |
| Proportion of patients in remission | annually, up to 5 years | assessed using a validated disease activity scale |
| Proportion of patients with anemia | annually, up to 5 years | assessed by patient report and labs |
| Proportion of patients with malnutrition | annually, up to 5 years | assessed by patient report and labs |
| Proportion of patients hospitalized | annually, up to 5 years | assessed by patient report |
Countries
United States
Outcome results
None listed