Getting involved
Patients and the public have an important role to play in the work of Gut Reaction - your views and experiences are central to the work that we do
Your experiences and opinions are important to Gut Reaction
We believe that working together with patients and members of the public is essential to make Gut Reaction a safe, trustworthy and useful resource for researchers.
Patient and Public Involvement and Engagement (PPI/E) in research, and particularly in research using health data, helps to make research more acceptable, more relevant, and more likely to be useful in the real world – ultimately improving the lives of people living with conditions such as IBD.
We aim to provide a variety of ways for you to get involved, from participating in events through our partners Crohn’s & Colitis UK, to joining us for interactive webinars, becoming a member of our advisory committee or sending us a question through our website or on social media.
You can read more about the work of our Patient Advisory Committee (PAC) below.
Patient and Public Involvement and Engagement (PPI/E)
PPI/E means ensuring all the research that we do is done together with patients and members of the public, rather than merely ‘for’ or ‘to’ you. Our funders, HDR UK, and partners Crohn’s & Colitis UK, NIHR BioResource, UK IBD Registry and Cambridge University Hospitals are all strongly committed to involving patients and members of the public in the research that they do in a meaningful way.
You can find some more information and useful resources on PPI/E using the links from our partners below:
Crohn's & Colitis UK
The best quality research happens when people with Crohn’s and Colitis are involved, and you can make a difference at every stage of research.
Research into Crohn’s and Colitis should include people from all sections of our community to ensure the outcomes from the research meet the needs of everyone affected by the conditions, regardless of ethnicity, age, disability, gender, sexual orientation, religion, or belief. And good news – there’s exciting and rewarding ways to get involved in research for everyone!
There are many ways that you can help shape new or existing research studies with Crohn’s & Colitis UK. These can include:
- Working with research funders to help prioritise patient needs.
- Reviewing and working in partnership on applications for funding.
- Joining project steering groups.
- Participating in focus groups.
- Completing surveys to inform the study.
You can browse opportunities for you to shape Crohn’s and Colitis research, join their Research Community or follow them on twitter, to receive all the latest opportunities!
NIHR BioResource & IBD BioResource
The NIHR BioResource has a national patient and public advisory group that acts as a voice for their participants.
Members of the BioResource advisory group help with projects in many ways, such as sharing their views, reviewing study paperwork and promoting the BioResource at events.
No special qualifications are required as every individual has a valuable – and unique – viewpoint. We welcome different viewpoints and expect our group members to have a breadth of understanding and tolerance of others’ views.
IBD Registry
The IBD Registry works with their Patient Advisory Group (PAG) as a reflection of their commitment to involving people living with inflammatory bowel disease, and those who support children or adults with these lifelong conditions, in the ongoing development of the organisation.
The purpose of the Patient Advisory Group is to contribute the voices of people with IBD to the activities of the IBD Registry – in particular when deciding its priorities and future developments. Members of the Group:
- Offer advice and give insight
- Ensure there is appropriate patient engagement in its work
- Challenge and question
- Help promote awareness of the IBD Registry amongst the IBD community; and
- Communicate to others the value of participating in the IBD Registry.
If you have any questions about the work of the IBD Registry PAG, please contact comms@ibdregistry.org.uk.
You can also subscribe to the IBD Registry’s regular newsletter or follow them on Twitter (@ibdregistry).
Cambridge University Hospitals (CUH)
CUH, together with the University of Cambridge, support public involvement in research through the NIHR Cambridge Biomedical Research Centre (NIHR Cambridge BRC). Across 13 themes of research, NIHR Cambridge BRC works with members of the public throughout Cambridge, East Anglia and the UK to ensure that research meets patients’ needs.
You can read more about why and how the NIHR Cambridge BRC supports PPI/E, how patient-led research is encouraged and find opportunities to get involved in research.
NIHR Cambridge BRC also offers a variety of free PPI/E training sessions for researchers and PPI/E information sessions for members of the public – you can find their latest calendar here.
Health Data Research UK (HDR UK)
Patient and Public Involvement and Engagement (PPI/E) is vital in the development of different areas of work across HDR UK, including those where there is a level of uncertainty. Involving patients and members of the public will be key in helping build a system that is worthy of public trust and confidence in using health data for research.
Read HDR UK’s Engagement and Involvement Strategy
HDRUK are working to grow their patient and public involvement and engagement activities, and are keen to work with a wide range of people in as many different projects and areas of work as possible. You can get involved in as much or as little as you like through their growing range of opportunities.
You can read more about involvement at HDR UK here.
Be part of Gut Reaction
Gut Reaction would not be possible without the support of people living with IBD choosing to share their health data. If you would like your data to be part of Gut Reaction and support vital research, you can join the IBD BioResource. You can also join the IBD Registry. The IBD Registry is a partner in Gut Reaction, which means health data collected from people who participate in both the Registry and the IBD BioResource can be linked and united to create a rich dataset for research.
The IBD BioResource is a way that people living with IBD can sign up to be invited to take part in research studies – participants provide a biological sample, complete a health questionnaire and provide consent for researchers to access their health records. Researchers can use the samples and data for research, and invite participants to take part in studies that are relevant to them – participants can choose which (if any) studies they would like to take part in.
The IBD Registry collects data from your hospital record on an ongoing basis, in order to build up a long-term picture of IBD treatment and care in the UK. If you join the Registry, you can also share information about your health directly, choose to share your data for research and ask to be contacted about new studies that are relevant to you and you may want to participate in.
The IBD BioResource and the IBD Registry are currently recruiting at more than 100 hospitals across the UK. If your hospital is a recruiting site, please ask your IBD team if you can take part at your next appointment. You can find more information about joining the BioResource here and the IBD Registry here.