Our vision is for there to be fewer strokes, and for people affected by stroke to get the help they need to live the best life they can. Our Research Strategy for 2019-24 will work towards this through:
- Partnerships to increase funding for stroke research.
- Giving those affected by stroke a louder voice in stroke research.
These align with Goal 2 of our Research Strategy.
To help us achieve these aims, we’re working with a process that has been developed by The James Lind Alliance (JLA), a non-profit making initiative established in 2004. The JLA brings people affected by particular conditions, the people who care for them, and health and social care professionals together to identify and prioritise the unanswered questions that they agree are the most important.
Using the JLA process, therefore, means that research priorities that are developed are important to the people most affected. This is different from the traditional approach where research priorities are decided by academics and the pharmaceutical industry, which has been shown to address issues that are not as important to the people most affected.
This process is known as a Priority Setting Partnership.
Why are we starting a Priority Setting Partnership for stroke?
So that we can make sure that future research can answer questions that are important to people affected by stroke, and the professionals who work with them.
Who will we work with?
We'll work with stroke survivors and the people who care for them (i.e. family and close friends), representatives of different healthcare professions, and charities whose members are affected by stroke.
What are our first steps?
We held a meeting in July 2019 with a number of people and organisations that might be interested in getting involved. As a result, we’ve now set up a Steering Group, and are considering who to invite as partners. We’ve also set up a Staff Panel so that colleagues across the Stroke Association know about the Priority Setting Partnership and can give the benefit of their experience and knowledge. We’re currently starting a small Voice of Lived Experience Group to help us develop communications.
What will the Steering Group do?
The Steering Group will need to make a number of decisions, for example - who to involve and how. As decisions are made, we'll add that information. As opportunities to get involved are developed, we'll include them here too.
What does the process involve?
How can I contribute?
If you have had a stroke, care for someone who has, or are a health or social care professional working with people affected by stroke, then you might:
- Tell us the questions or issues that you think future research should answer.
- Tell other people about the opportunity to get involved.
- Look at a list of questions and tell us which are most important to you.
- Come to a workshop to discuss the top 25 or 30 questions.
As soon as each opportunity is open, we will update this page and, if you have signed up to our email list, we will let you know.
How can I find out more?
If you would like to be added to a mailing list to receive information about the partnership as it develops, please send an email to our Project Manager, Sandra Regan at Sandra.firstname.lastname@example.org