Approved for Funding Award from PCORI

December 20, 2013

“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?

  1. Develop and test routine collection of PROs (Patient Reported Outcomes) at 4 ImproveCareNow Care Centers
  2. Increase opportunities for patient and family participation!
  3. Mount a campaign to increase engagement
  4. Create an interoperable database, that’s standards-based
  5. Test methods to use mobile health tools to collect longitudinal data from patients
  6. Explore (with the CDRN) the creation of a "virtual" biorepository
  7. 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.

View our full press release, and join the conversation on Twitter by adding #PCORI.

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