This year we have teamed up with the James Lind Alliance, experts in priority setting partnerships, bringing patients, their carers and health professionals together to agree a top ten list of research priorities.
Several other charities have had very successful partnerships. By raising the profile of the research needs for their particular cause, they have been able to direct research to where it’s needed most and attract funding to answer some of the top ten unanswered questions.
The steering group for the PSP met for the first time on Friday 5 May in London. At the meeting, the terms of reference for the steering group and the PSP protocol were agreed, including the scope of the PSP. In 2014 we carried out a pilot project which helped us to determine the scope.
There are a number of stages within a priority setting partnership:
- a survey to submit your questions about coeliac disease (this includes the other immune conditions caused by gluten eg dermatitis herpetiformis and gluten ataxia) which may be answered by further research.
- categorisation of the submitted questions by the information specialist and steering group
- the information specialist will then check the evidence base to ensure the research hasn’t already been completed
- a second survey to rank the research questions and provide a targeted list to take to the workshop.
- one day workshop involving patients, their carers and health professionals to discuss and agree a top ten list of priorities.
- publication of the top ten research priorities and ongoing engagement of stakeholders; researchers, funders, health professionals, patients and carers.
We aim to complete the whole process by early 2018, in time for our 50th anniversary year.
It’s important that everyone has the opportunity to have their voice heard; no one understands coeliac disease better than those who live with the condition and those who care for them.
The Steering Group last met on 20 October where it prepared for the second survey. From the first survey we received more than 2500 questions about coeliac disease and other gluten related autoimmune conditions. These questions have been summarised into 43 research questions and our second survey offers you the opportunity to select and rank the ten questions that mean the most to you.
The results from the second survey will be taken to a one day workshop in London, 1 February 2018. At the workshop, patients, people who care for them and healthcare professionals will jointly agree the top ten list of research priorities. We are currently looking for a few more people to participate in the workshop. To register your interest and obtain further information, please complete the application form.
Coeliac disease PSP partners: