Over the course of the COVID-19 pandemic, there has been a high level of patient demand for information about COVID-19 and its impacts on the inflammatory bowel disease (IBD) community. IBD Partners and the Crohn's & Colitis Foundation conducted a series of focus groups early on in the pandemic (between August and October of 2020). Focus groups are a form of group interview and are particularly useful for exploring people's knowledge and experiences.

The goals of the study were to 1) better understand the experiences of IBD patients during the COVID-19 pandemic and 2) identify knowledge gaps about IBD and COVID-19 and preferred methods of accessing information in order to make informed decisions.

To our knowledge, this is the first focus group study about the COVID-19 pandemic and the IBD community. In each focus group, participants with IBD talked about different fears, concerns, and questions related to the pandemic. They also discussed how and when they like to receive new information.

The findings of this study show the importance of the patient voice when deciding what to research and how to share those research findings with the public.

Successful patient-powered research networks (PPRNs) can improve health behaviors and outcomes. Researchers for this study wanted to better understand how a PPRN might meet the needs of people with inflammatory bowel disease (IBD). To do this, they sought feedback from members of the IBD community through focus groups and phone interviews. Focus group discussions were designed to understand participants' experiences and needs managing their disease. Discussions also explored the outcomes most important to participants and ways to make a PPRN most useful. Individual interviews were used to assess different design prototypes of the patient portal user interface and explore ways the portal could help track and manage IBD while simultaneously contributing to research. The research found that participants were more willing to participate in the PPRN if the knowledge gained from research studies would benefit both society and the individual. However, participants were concerned about the credibility of online resources, pharmaceutical industry profiting from their data, data security, and the time it would take to participate in a PPRN. Participants expressed that they wanted a true and equal partnership in every phase of building a PPRN. They also felt it was important to have access to personal health records and be able to track health status and symptoms. This feedback was incorporated into the design of the IBD Partners PPRN.