Research plays a vital role in rebuilding lives after stroke, through understanding what causes strokes in the first place, developing new treatments, and finding the best ways to support stroke survivors.
Until now, those most affected by stroke haven’t had enough say in what kind of research gets funded. Our Stroke Priority Setting Partnership (PSP), which concluded earlier this year, aimed to identify the research areas that matter most to stroke survivors, carers and professionals.
“With stroke research budgets stretched more than ever before due to the pandemic, we need to make sure funding is available where it makes the biggest difference,” says Dr Richard Francis, Head of Research at the Stroke Association.
“The Stroke PSP asked stroke survivors, carers and health professionals what questions they need research to answer, ensuring that the needs of people affected by stroke are at the heart of research funding and planning.”
We followed a process laid out by the James Lind Alliance, a non-profit initiative that has supported Priority Setting Partnerships for many different health conditions. Stroke survivors and carers were at the heart of every stage of the project. Their input helped us to collect and prioritise around 4,000 questions to identify uncertainties in stroke care that are most important for research to address.
Annabel Wright, 23 from London, shared her experiences in workshops for the Stroke PSP.
“My stroke occurred on Easter Sunday in 2019, while I was in my third year of university,” she says.
“I was looking at my phone when suddenly half of my visual field dissolved. I couldn’t read or look at anything and had a terrible headache. At the hospital, I was told that I’d had a stroke caused by a hole in my heart.
“Nearly three years on, my vision is still very much affected – I have residual ‘blind spots’ that worsen if I strain my vision a lot. And I wasn’t prepared for the psychological aspect of going through a stroke – I still suffer from health anxiety.”
She’s pleased that stroke survivors are part of the conversation around priorities for research.
“This will help research with its aim to increase medical understanding and improve outcomes for people affected by stroke,” she says.
“Stroke survivors have a unique perspective as we know what it’s like to be at the receiving end of care.”
Dr Shirley Thomas, Associate Professor of Rehabilitation Psychology at the University of Nottingham, agrees that it’s really valuable for people affected by stroke to have a voice in setting research priorities.
“One of the biggest challenges for myself and my colleagues is securing funding. It’s particularly challenging in stroke, a complex and underfunded area of health research,” she explains.
“It’s vital to direct funds to the areas of greatest need so research can inform improvements in treatment and care that will bring the most benefit to people affected by stroke. The Stroke PSP results will help researchers to increase evidence in these areas.”
What are the priorities identified by the PSP?
- Ways to stop stroke happening for the first time.
- The benefits and risks of new therapies for stroke.
- Mental and emotional problems caused by stroke.
- Fatigue after stroke.
What needs to happen now?
The priorities tell us the areas where research is most needed to improve treatment and care. This is the first step. We’re calling on the stroke community to continue to invest in these areas so research can make the biggest difference in the lives of people affected by stroke.
Stroke News magazine
This article is featured in the winter 2021 edition of our magazine, Stroke News. Subscribe to our future editions available in print, on audio CD, or via email.