What's more, we believe that these research studies need to be shaped according to the needs of people living with Crohn's or Colitis who are experts in their conditions from experience. That is why we are working to bring the patient voice into every stage of research.
'Taking part in research' can mean many things: from a quick multiple-choice survey, to being part of a clinical trial for a new drug, or even helping shape their strategy right from the beginning of the project. Whatever you’re interested in or have time for, there’s an opportunity for you to have your say.
We recently surveyed our research community to see how they felt about participating in research. Amazingly, everyone we asked enjoyed taking part in research and 90% definitely wanted to get involved again! When asked about time commitment and effort, 45% of people said that it was just what they had expected and 55% of people even said that it was easier than they thought it would be.
When we asked why they wanted to take part in research, people gave the following answers:
- To help others and give something back (84% of people)
- Because they are interested in the latest IBD research (37% of people)
- To be part of the Crohn's and Colitis community (26% of people)
- To feel empowered in their condition (16% of people)
It was a way for me to feel useful and that my input might matter or be important. It was a way for me to help people towards understanding and better treating Crohn's. It is simpler than you might think, and it actually made me feel more pro-active in dealing with my illness.
I decided to take part in research because at the time I was very recently diagnosed with Crohn's and felt a bit lost - taking part definitely helped me feel more involved with the community and some of the questions featured even gave me an insight into what other people with Crohn's or Colitis potentially go through on a daily basis.
I would definitely take part in research again! To those people who are contemplating taking part in research I'd say go for it! You've got nothing to lose and you won't be pressured to take part in future studies if you don't have a great experience the first time. It's a great way to get involved further in the Crohn's and Colitis community and makes you feel like your contributing to something that will make a difference to the lives of people living with these conditions in the future.
Together, these experiences paint a really exciting picture about how volunteering for a research study can benefit not just future generations, but also help improve treatment options today and put you in control of your condition.
By taking part in research studies that are advertised on our Research Involvement webpages, you can be sure that every single one will be ethically sound, and that your data will be protected and used responsibly only for the purposes of that study. You can receive a summary of the latest exciting studies direct to your inbox by signing up to our quarterly newsletter.
Finally, we're really excited to be bringing you a virtual Patient and Public Involvement in Research Day on Saturday 17th October 2020, where you can give your views on the latest studies directly to the researchers! Taking place from 10am to 2pm, this free event will bring together researchers, healthcare professionals, the public, and people with Crohn’s or Colitis to engage in an open discussion about research. All you need to do is register using the link below, then respond to our Zoom invite to watch and ask your questions live.
Getting involved in this simple way can bring your voice to a conversation that will ensure research delivers results for you.