Working Together to ImproveCareNow: An Example of Research Co-Production

In ImproveCareNow there is a saying (there are many, actually) that goes: “we’re building the bike as we’re riding it.” This feels especially true with research co-production because as our team has been working to create the infrastructure, tools and support necessary for research co—production to happen in ImproveCareNow, we’re aware that it’s actually already happening.

The PRODUCE Study, which aims to examine the effectiveness of the specific carbohydrate diet (SCD) in reducing symptoms in pediatric patients with Crohn’s disease and ulcerative colitis using a combination of “N of 1” methods and mHealth technology, is a real example of co-production in action. Here’s why:

1. During 2015, the ImproveCareNow (ICN) community identified the most important areas where we should be focusing research, submitting suggestions for over 200 pediatric IBD research topics. This list was then refined and condensed to 22 unique potential research topics. The study idea for PRODUCE was generated during this research prioritization work
2. The application for funding to PCORI was co-produced by a team including three parents and one patient from the ICN community
3. The same parents and patient who contributed to the application are part of the study team
4. The ICN community collaborated to name the PRODUCE study. In total 11 names were submitted and over 100 community members voted to select the winning name
5. The study team is made up of parents, patients, physicians, dietitians, nurses and researchers from seven different ICN centers. They are working together to develop recruitment and enrollment processes, diet training materials for families and clinicians, and strategies to help everyone get optimal benefits and results from this study.

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ImproveCareNow is committed to involving patients and parents in all aspects of research about pediatric IBD. If you are interested in research projects, like PRODUCE, please sign up to receive Research Updates >>

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