As part of the world’s biggest ever research project investigating food allergies researchers from The University of Manchester’s Health eResearch Centre (HeRC) facilitated a pan-European workshop to understand more about how an innovative web application can engage patients in the creation of valuable new research data.
Delivered in Berlin in early-October, the workshop is part of the iFAAM study, a collaborative project led by Prof Clare Mills from The University of Manchester that aims to understand more about the ‘how’ and ‘why’ of food allergies and the impact these reactions have on patients’ day-to-day lives.
Currently, medical practice relies heavily on a patient’s ability to recall possible causes, outcomes and the severity of their allergic reaction. Now, with advances in technology and the prevalence of home computers researchers think they may have found a way to improve the reporting of symptoms, removing the pressure on patients to remember specific details of their reaction.
Through the creation of a web-based portal (AlleRiC), the researchers believe they have created a resource that will not only better support patients in improving understanding about their food allergies but one that will also provide much-needed evidence that is required to crack the food allergy enigma.
The website allows patients to capture in real time the progression of their symptoms. Through a combination of closed questions, free-text responses and the ability to upload photographs of any physical reactions the website captures a variety of relevant information and uploads this to a secure server that can be accessed by the AlleRiC research team. This information can then be collated and analysed by researchers across the world to understand more about food allergies, a condition that affects 20 million people across Europe.
Following an initial test of the software, researchers were keen to get feedback from food-allergy patient groups and invited representatives from nine organisations across Europe to share their thoughts on how AlleRiC could help people with food allergies, assess usability and identify any potential barriers to its use.
Leading the workshop were HeRC’s Dr Phil Couch and Dr Chris Munro: “The workshop was a great opportunity to find out from the patient organisations’ representatives how they think the end-users will engage with the site. We had impressive representation from nine groups across Europe and the feedback from the workshop participants was really consistent. We knew the site needed to be simple and straightforward but that message came loud and clear from the representatives and this kind of information is invaluable.
“We ran the workshop just before the iFAAM annual meeting so the timing was great. It was inspiring to hear how much good work is taking place across Europe to help tackle the prevalence of food allergies” said Dr Munro.
Funded by the Health eResearch Centre’s Small Projects Scheme the scheme was set-up to help encourage public involvement in research. Public Involvement Researcher at the Health eResearch Centre Dr Lamiece Hassan said: “This project is a brilliant example of how clinicians, researchers and patient organisations can come together to shape the design of software and research for the better. The AlleRiC study and the Europe-wide iFAAM project are delivering work that can have a real impact on the lives of millions. I am looking forward to seeing how both projects and collaborations develop in the coming months.”
The AlleRiC website will be available in early 2016 with more information about the projects development to follow.
Ends
Notes for editors:
The Health eResearch Centre (HeRC) is delivering large scale, population wide health research by harnessing the power of information and technology.
Led by The University of Manchester and bringing together research excellence across the North of England (in partnership with the universities of Lancaster, Liverpool and York) the Health eResearch Centre is increasing the pace of progress in the UK’s health sector by turning under-used health information into new knowledge.
The Health eResearch Centre – People | Data | Methods
For more information please visit our website www.herc.ac.uk #datasaveslives
Enquiries:
Stephen Melia
Communications and Public Engagement Officer
Tel: 0161 306 7876
Mobile: 07757 310213
Email: stephen.melia@manchester.ac.uk