When I started giving solid food to my youngest son, he had immediate and scary allergic symptoms to egg, milk and peanut. Now at 3 years of age, his food allergies dominate everyday life.
He can’t eat common foods, we have to constantly ensure we have food alternatives and carry medications everywhere we go. My heart breaks when I can’t give him the soft serve ice cream most other kids have. I feel able to keep him safe at home and when at nursery, however, I worry about the dangers he will face as he gets older, becomes more independent and eats away from home.
This is why I feel incredibly passionate about working for the Centre for Applied Excellence in Skin and Allergy Research (CAESAR) and running the food allergy priority setting partnership.
The Journey of a JLA PSP
Food allergies affect up to one in five children in the UK. Despite the urgent need for better understanding, diagnosis and treatment, research priorities have often been set by funders and researchers rather than those directly impacted.
This is why we’re delighted that the NIHR have funded us to work with the James Lind Alliance (JLA) to run a Priority Setting Partnership (PSP). The PSP process ensures that children and young people with food allergies, their parents, and health care professionals who care for them have a voice in shaping the research agenda.
The goal of a JLA PSP is to create a list of the top 10 research questions that reflect the needs of those living with and looking after people with food allergies.
Engaging the Right Voices
One of the most critical aspects of the PSP process is engaging everyone with an interest in the problem.
To ensure inclusivity, we set up a steering group to help us make key decisions on the project. It is made up of those with direct experience of food allergy including young people, parents, healthcare professionals who work in paediatric allergy and representatives from eczema and allergy charities.
The first stage involved setting up an online survey to capture the experiences and unanswered questions important to young people, their parents and healthcare professionals. We had 832 responses with over 2500 questions submitted. To provide an additional opportunity for children to contribute, we held an online workshop facilitated through Eczema Outreach Support where young people with eczema and food allergies discussed their experience of food allergy. They were particularly concerned about feeling left out and managing food in school and when eating out.
With the help of our steering group, we have grouped the survey and workshop responses and formed 60 summary research questions. They cover topics such as the early life experiences that cause allergies, how to prevent food allergy, improving the accuracy and reliability of diagnosis, what are the most effective treatments and how food allergy impacts children and their families.
Navigating Challenges and Looking Ahead
Whilst we achieved great engagement to our first survey, it has been tricky to ensure input from a diverse range of people including children and young people, fathers of children with allergies and those from minority ethnic backgrounds.
We aim to maintain the momentum and enthusiasm over the coming months when later this month we launch the second survey asking respondents to select their top research questions from the long list of 60.
The top questions will then be taken to a final workshop where children and young people with food allergy, their parents and health professionals will select the final top 10 research priorities.
The Impact of Setting Priorities
At the end of the process, the final top 10 research priorities provide a powerful tool to guide future studies, funding decisions, and policy changes.
By working collaboratively with children and young people with food allergy, their parents and healthcare professionals, I feel we will ensure that food allergy research moves in the right direction—one that truly meets the needs of patients and healthcare providers alike.
by Dr Roxanne Parslow, a Research Fellow at the University of Bristol’s Centre for Academic Primary Care