Rosanna has been our Patient Partner from the start of Gut Reaction. As a member of our Gut Reaction Core Team and part of the Patient Advisory Committee (PAC), her experience and input is central to our work. Rosanna has a background in psychology and works part-time on a research project at Cambridge University
Rosanna, you have been involved in Gut Reaction for nearly 3 years now. Can you tell us how and why you joined the team, and what your role involves?
I was originally asked to review some early stage planning documents for Gut Reaction in 2019, and the project caught my attention straight away. Following my own inflammatory bowel disease (IBD) diagnosis in 2004, and subsequent experience trying many different treatments to control my symptoms, I was very keen to be involved in any research that could improve future diagnosis and management options for others in the same position. The idea of a new approach using information that already existed in medical records interested me too, so I took the opportunity to join Gut Reaction as their Patient Partner.
Three years later, I’m a member of the Gut Reaction Core Team representing the IBD patient community. This means that I attend regular meetings to discuss progress, any issues that may have arisen and plan future work alongside the rest of the Gut Reaction Team, ensuring that the opinions of those living with IBD are always heard. As a member of the Patient Advisory Committee (PAC, a group of individuals affected by IBD who advise and support the Gut Reaction team), I am also involved in various projects including developing new approaches to data access applications and training materials for those new to the Gut Reaction. Our PAC brings together many different experiences and opinions, and an important part of my role is sharing the view of our group at the Core Team Meetings.
Gut Reaction supports research using consented health data from individuals who are part of the NIHR BioResource. From the patient perspective, why do you think that this kind of research is important in IBD?
An unfortunate consequence of living with a long-term condition like IBD is that you spend a lot of time in healthcare settings. Whether you need check-ups, tests, new medications or – in severe cases – surgery, this means that a great deal of information about your illness is recorded and stored by the NHS. Gut Reaction, supported by HDR UK , gives patients an opportunity to benefit from this data beyond their own personal care, as when you combine detailed medical records from many people experiencing IBD you have a potentially great resource for research.
IBD can be difficult to manage as responses to medication vary, as do symptoms and how the condition progresses. By studying information from a very large group of individuals we can look for clues as to why this happens, and hopefully develop new approaches to controlling IBD that work for a wide range of patients. Traditional clinical trials have given us important treatment options, but they can be slow and involved for patients. Using information that is routinely collected by Doctors and Nurses, with all details that could identify an individual removed (‘de-identified’), offers a simpler way of supporting research, and potentially benefits others with similar conditions.
When you joined Gut Reaction, what were your hopes for the project? Do you think we are close to achieving them?
My aim was to be part of a project that had patient perspectives at its heart; where individuals with lived experience of IBD were not only involved in decision making on specific issues, but also more widely consulted as key members of the team. Although we are still at an early stage with Gut Reaction, we have achieved so much in terms of collaboration and embedding patient perspectives. As a person living with IBD, I of course hope that Gut Reaction research will lead to new, more effective treatment options, but I also think that it can act as a model for future initiatives using medical records for patient-centred research.
The Gut Reaction PAC share lived experiences of IBD, and represent the wider patient community, informing decision making and planning to ensure that data is used in a safe and acceptable way. Is there any specific aspect of your involvement with the PAC that you are particularly proud of, or that you think could have an impact beyond Gut Reaction?
The PAC have been able to get really involved in how Gut Reaction has been set up and will be run in the future. One of our most important contributions has been to ensure that patients are always involved in reviewing requests for access to the Gut Reaction data, working with the wider team to find an approach that encourages vital research while supporting patients to comment on whether a research proposal is an appropriate and acceptable use of their data.
Individuals with experience of IBD also bring important insights into what types of research are most needed, and our views are not always the same as study investigators. For example, I would like to see research into how you can best live with IBD, including dietary and mental health considerations, alongside studies into new drugs. I hope that through the work of projects like Gut Reaction, it will become standard for the perspectives of patients to be embedded in all health data research, so that any results support the group who donated their information.
Looking to the future, what else do you think Gut Reaction could achieve for the IBD community and what role would you like to play in this?
I would like to continue to represent the IBD community in research through Gut Reaction, not only as an individual with a long history of IBD, but also drawing on my experience to support those with a more recent diagnosis. I am particularly interested in how Gut Reaction can enable research into quality of life in IBD, and how we can get more patients involved in choosing the direction of research so that the IBD community has a resource that reflects their needs and choices.
Finally, do you have any advice for individuals living with IBD who might be interested in getting involved in health data research?
I’d definitely encourage anyone who is interested to get involved! You don’t need any knowledge of working with data, as there is plenty of support and training available through Gut Reaction and Crohn’s & Colitis UK. The important part is being happy to share your experiences and views. We need as many people as possible from different backgrounds to get involved in future health data research projects; the more diverse our population is the more likely that any resulting research will be able to help the wider IBD community.
We’d like to thank Rosanna for sharing her experiences of Gut Reaction with us here, and for her ongoing contribution to our research.
