Posted by Catalina Berenblum on June 08, 2018
When I joined ImproveCareNow about 1.5 years ago, research was one of the primary ways I wanted to be involved. I’ve lived with Crohn’s disease for almost 11 years, and for much of that time research felt like something that happened behind the scenes and was entirely out of my realm of influence. Often research is done to or about patients and families, but very rarely is it done with them. Engaging patients and families in research can not only enhance the research itself, but it can also help patients and families feel as though they have a stake in the discovery of new knowledge about IBD.
Because I have an affinity for and an interest in research, it has made it very easy to find a place for myself in ICN - to be engaged in every aspect of the behind the scenes research work. One of the things I do is to represent the patient voice on the ICN Research Committee, a multidisciplinary group that assesses research proposals and provides feedback, as well as grants access to the ICN Registry. Although I’m not an expert on every detail of a successful research study, I can provide feedback about feasibility and what a patient might experience, as well as draw attention to potential benefits research may have for the IBD community. When I joined the Research Committee, a Proposal Review Sheet for parents was in use, but there was not one for patients. Given that parent and patient experiences with IBD are largely different, I took it upon myself to adapt the Parent Review Sheet for a patient audience, ensuring that patients can provide direct feedback on study proposals, using a sheet tailor-made for them.
Through ICN I have also been directly involved on research studies currently happening across the network. One of the most significant examples of this is my involvement with PRODUCE (Personalized Research on Diet in Ulcerative Colitis and Crohn’s Disease), a study currently being conducted about the Specific Carbohydrate Diet (SCD). As someone who has experience with the SCD, I’ve loved being able to contribute my ideas on regular calls as a member of the study team. Specifically, I noticed that the study’s website and study materials included a lot of information about the study that was written for parents and providers, but very little for patients.
As someone who knows how important patient dedication is to the success of nutritional interventions, I sought to create resources that explained PRODUCE in a way that patients could understand. I adapted leaflets written for parents so patients could receive them, and created a short video that providers can show in clinic to explain the study and its significance to patients. Ultimately, while parents and providers can attempt to interpret resources for patients, the patient experience is unique. I believe this makes offering research-related resources, created by patients for patients, 100% invaluable to the success of a study.
A note, too, on how easy it was to get involved with research. I’m a rising senior in University, studying Political Science, and with aspirations of going to Medical School. Even still, my knowledge about the research process wasn’t as extensive as you may expect it to be. However, I did not need to be familiar with the intricacies of statistical analysis to get involved. In my case, using online resources to learn some basics about how research works, and feeling comfortable asking questions as they came up, was enough. ImproveCareNow is passionate about getting patients and parents involved, so I have always found it incredibly easy to connect with people who can answer my questions. Getting involved with research may initially seem daunting, but the ICN community is incredibly welcoming and they really value your opinion. Being involved is decidedly empowering!
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EVENT: Hear Catalina speak about research on June 13 – Join the Virtual Community Conference
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