“It’s a big day for kids with IBD,” exclaimed Dr. Peter Margolis, Principal Investigator for the newly approved PCORI research project – ImproveCareNow: A Learning Health System for Children with Crohn's Disease and Ulcerative Colitis. Alongside Drs. Michael Seid and Richard B. Colletti, Dr. Margolis will be leading 1 of 82 research projects approved for PCORI funding to help patients and those who care for them make better-informed healthcare decisions!
In the next year and a half, the team proposes to: 1) implement a full-scale peer-production system that engages patients, families, clinicians and researchers, working together to conduct research and improve health and healthcare, and 2) develop the infrastructure to assemble a comprehensive set of longitudinal patient-centered data.
So what does this mean for the Network?
- Develop and test routine collection of PROs (Patient Reported Outcomes) at 4 ImproveCareNow Care Centers
- Increase opportunities for patient and family participation!
- Mount a campaign to increase engagement
- Create an interoperable database, that’s standards-based
- Test methods to use mobile health tools to collect longitudinal data from patients
- Explore (with the CDRN) the creation of a "virtual" biorepository
- Achieve data linkages with large data holders providing access to pharmacy benefits data and utilization data
To date, more than 10,000 patients have provided consent for research (that’s over 95% of all patients approached) –and by the current rate of growth, 15,000 patients will be included by July 2015.