Effective Patient and Public Involvement (PPI) is important, as it ensures that research is acceptable and relevant to people affected by Crohn’s and Colitis. We've been working with Gut Reaction to create a free and publicly available PPI training programme to support and empower people to shape health data research.
Gut Reaction is a unique, secure data resource designed to facilitate research into Crohn’s and Colitis. It aims to improve treatment options and patient outcomes through safe, transparent, and responsible use of patient data. It does this by building on the high-quality health data from participants in the National Institute for Health Research (NIHR) IBD BioResource - part of the NIHR BioResource. More than 34,000 people have consented to take part in the NIHR IBD BioResource and share their health data, and Gut Reaction securely links ‘real-world’ data from other data sources, including NHS trusts and the UK IBD Registry.
Patient data holds answers to vital research questions, but this information is currently stored in different places across the NHS and research organisations, making it difficult to use for medical studies. To unlock the full potential of health data and benefit the patient community, the data needs to come together. But this must be done securely, and only for the purpose of improving health. Gut Reaction works with the Crohn’s and Colitis patient community alongside experts in data security and privacy. This ensures that patient perspectives and ideas are embedded in research from the very beginning, so that research delivers what’s really needed.
We know that training and support are key to ensuring PPI has a positive impact. We’re pleased to have worked in partnership with Gut Reaction and PPI representatives to develop a free and publicly available PPI training programme to support and empower people with Crohn’s and Colitis to contribute to health data research.
Sarah Sleet
CEO of Crohn's & Colitis UK
The Gut Reaction PPI training has been developed to increase or refresh the understanding, skills, and confidence of patients and members of the public involved in health data research projects.
Through co-creation with people living with Crohn’s and Colitis and members of the public, Gut Reaction have created training materials that cover an introduction to research using health data and information about how public involvement supports research, using real-life examples.
The training includes an introduction, three modules, and a quiz. Each module has several sections and is accompanied by ‘additional materials’, including videos, links to websites, and reading.
The PPI training has been so valuable, giving me a great overview of what PPI is and why it’s important. The training is comprehensive without being overwhelming and it gives me a foundation to better understand health data research, so I can make a more informed contribution.
Patient Contributor
