EB Research Priorities with the James Lind Alliance

 

The overview:

• DEBRA and The James Lind Alliance are looking for your help to decide what the most important questions are when it comes to EB research.
• We’re looking for people to join a panel that will guide a project to identify the most important unanswered questions about EB that could be answered through research.
• We’re looking for people affected by EB (living with EB themselves or family members/carers), or healthcare professionals working with people living with EB.
• The panel will meet in monthly, two hour-long, online meetings, over the course of 9 – 12 months.
• DEBRA will offer members who are on the panel a voucher of value up to £25 per hour to a maximum of £50 for each meeting. Online meetings attract an additional £5 per 2 hour meeting to cover expenses and face to face meetings will receive actual travel expenses incurred.
• Register your interest here and then we will be in touch to talk about it further.
• If you’re not on the steering panel, you can still get involved in the surveys, interviews or focus groups that may be part of this project.

 

Tell us you're interested 

 

About the James Lind Alliance project:

The team here at DEBRA is being guided in this project by The James Lind Alliance. The JLA is a non-profit organisation that brings together patients, carers, and clinicians who live or work with a particular disease or condition. Together they agree on the most important unanswered questions for their condition that can be addressed through research.

The goal is for one or more of those research priorities to be turned into a research study, and that this goes on to have a life-changing impact on the treatments or services available to patients and the way they are delivered. It also allows funders, like DEBRA, to understand what sort of research projects are most important to the EB community.

 

 
Be a part of this project:

There are two ways you can be involved in deciding which EB research questions should be answered first.

(1)    Join the panel, (or Priority Setting Partnership steering group)
We are looking for a diverse group of DEBRA members, and EB clinicians, to join a steering group of up to 12 people.  The steering group will advise and guide this project all the way through, making key decisions around….  To do this, we’re looking for people who:

• are able to commit to the length of the project (around 9 - 12 months) and attend a 2-hour meeting every month.
• are affected by EB, or who work with people affected by EB.
• are comfortable sharing their thoughts, listening to others and giving constructive feedback.
• like working in a group, with good communication skills – although no specific experience is needed.
• have access to a computer/tablet/phone and internet connection, and can attend virtual meetings and briefly prepare for meetings

 

Before you commit, we will chat to you about the roles and responsibilities of being on this steering group, and you will have a named DEBRA contact for the duration of the project to provide guidance throughout.  

Any questions now? Just email membership:@debra.org.uk or speak to Sophie Jones on 01344 771961

Tell us you're interested 

 

(2)    Give us your views throughout the project
If joining a steering group isn’t for you, you can still have your say as the project progresses from March 2024.
We will let members know when there are surveys, interviews or focus groups taking place to inform this work via our membership emails, but if you want to be sure you’re kept in the loop, sign up to the DEBRA Involvement Network and we’ll keep you in the loop.

 

Sign up to the involvement network

 

More information about the James Lind Alliance Steering Group:

DEBRA and the James Lind Alliance will work with the members of the Steering Group at all stages of the project to guide you through the information being shared and the decisions that need to be made at different points. The Steering Group will decide together how the key stages of the project, but this will include discussing and making decisions about:

• publicising the work to potential partners
• developing survey forms, and other methods where necessary, to gather uncertainties
• helping to publicise the survey as widely as possible and interpreting the survey data
• deciding how to search for existing research evidence to see whether suggested uncertainties have already been answered
• after reviewing the evidence, agreeing the list of priorities to be discussed at the priority setting workshop
• publicising and helping to recruit to the priority setting workshop
• understanding how best to publicise the final top 10 uncertainties to the research community
• developing research questions from the agreed priorities and working with research funders where necessary to provide any extra information they need.

 
The Steering Group will be invaluable in advising on the best language, methods and inclusive engagement strategies to reach a diverse range of patients, carers and clinicians. They will be individuals who are able to listen to, respect and incorporate different perspectives into the process. The JLA method of identifying the key research priorities is centred around values of fairness and transparency, and the principle of shared priority settings with the whole community.

All Steering Group members will be asked to complete an Interests and Privacy form, as well as sign a Terms of Reference that includes a code of conduct, but we will give you more information about each stage of the project as we move forward.

Join the panel