The survey - Have your say for stroke
During these unusual and worrying times, stroke continues to strike every five minutes. If you can, please help us to change the future for people affected by stroke by telling us your questions for stroke research.
To help as many people affected by stroke as possible to have their say, the survey will be open for several more weeks. As soon as we set a closing date, we will publish it here.
We understand that COVID-19 has radically shifted priorities for everyone in the UK and across the world. If we receive questions related to COVID-19, we may also send them to the National Institute for Health Research. This can help to inform research right now. If we do this, we won’t tell them anything about you except whether the question has come from a stroke survivor, or someone caring for them as family/friend, or professional.
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.
Watch this short video to learn more
Why have we started 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.
We're working 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.
- Guide decisions for the Priority Setting Partnership in stroke.
- Make sure that we reach as many people affected by stroke, and health and social care professionals as possible.
You can see some of our partners below.Sandra.firstname.lastname@example.org
What were 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 set up a Steering Group, and are inviting partners. The Steering Group makes decisions, for example, about who to involve and how. As opportunities to get involved are developed, we'll include them on these pages.
We’ve also set up the Stroke Association Staff Panel so that our staff and volunteers know about the Priority Setting Partnership and we can make the most of their experience and knowledge on stroke.
What does the process involve?
You can read about the Priority Setting Partnership process for more information.
You can also find out more in this animation.
How can I contribute?
If you have had a stroke, support someone that has as a family member or close friend, 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.email@example.com