Researchers and patients from across the UK arrived in Manchester on Saturday 7 September 2019 to take part in one of the largest patient involvement in IBD research events to date. During a highly stimulating and intensive day, patients had the opportunity to provide vital feedback on 9 of the most innovative IBD research projects currently in development.
Three sessions were live streamed from the day which included the introductory session on the importance of patient and public involvement in research, the largest IBD patient database in the UK - the IBD Bioresource and the Mangetoo project looking into nutrition and health.
Even though the event is now over, we are still looking for vital patient involvement. The videos for both Dr Miles Parke's talk on the IBD Bioresource and Dr Kapil Sahnan's session on the Mangetoo project can be found below. We would really appreciate it if you could take the time to watch these and complete the online PPI questionnaires associated with both platforms. The questionnaires are completely anonymous and will be available for 1 week. This is your chance to shape two of the largest and most innovative IBD projects in the UK.
Schedule - 7th Sep 2019
10:00-10:20 Introductions and impact of patient involvement in research
Sue Blackwell, Patient Representative.Phil Tozer, Consultant Colorectal Surgeon, St Mark’s Hospital;
Phil Tozer, Consultant Colorectal Surgeon, St Mark’s Hospital.
Jennie Popay, Professor of Sociology and Public Health at the University of Lancaster.
10:20-11:00 IBD Bioresource - translating today's science in tomorrow's treatments
Professor Miles Parkes (Cambridge University Hospital)
The IBD BioResource aims to assist quality Crohn’s and Colitis research and speed up patients benefit from scientific progress. Converting recent research discoveries into better ways to prevent, diagnose and treat IBD and its complications requires access to sizable and well-defined groups of patients.
We have created and are expanding a national platform of 25,000 patients with Crohn’s or colitis and are generating detailed genetic and descriptive data. This information would be available to the research community in anonymised form for analysis, and facilitate recruitment of patients for future research projects based on their genetic and clinical characteristics.
Professor Parkes and his team are looking to gain vital insight from patients on the IBD Bioresource and want you to complete a short online questionnaire after listening to his talk available above. Both the live stream and online questionnaire will be available for 1 week and the questionnaire will be taken down on 15th September 2019. The questionnaire is anonymised and can be found on the following link: http://www.bit.ly/ibdbioresource
Mr Kapil Sahnan (St Mark's Hospital and Academic Institute)
Mangetoo believes a good diet is integral to managing your health conditions. Your diet should be specific and tailored to your lifetsyle. But 60% of people can’t access a dietitian. ‘Teledietetics’ can be just as beneficial as a face-to-face dietician.
Mangetoo is a bespoke video consultation platform so you can access your dietitian whenever and wherever you want! Mangetoo members can use our platform to set goals and plan their diet. We are changing the way we use nutritional data to allow you to make personalised choices for evidence-based diets.
It can be hard to find people who know what it's like to think carefully about food. At Mangetoo there is someone for everyone. You can access groups that understand your food journey, and learn from their experience. You can even share videos.
We want to know if our intervention is appealing to you as a patient.
Dr Sahnan and his team are looking to gain vital insight from patients on the Mangetoo platform and want you to complete a short online questionnaire after listening to his talk made available above. Both the live stream and online questionnaire will be available for 1 week and the questionnaire will be taken down on 15th September 2019. The questionnaire is anonymised and can be found on the following link: http://www.bit.ly/mangetoo