We think it's vital that people affected by stroke are involved in research throughout the process, from setting priorities to helping to analyse results, to sharing findings. This will help ensure that the right research is being undertaken, that it meets a real need for those affected by stroke, and that it's shared with a wider audience.

Patient and Public Involvement (PPI) in research is when research is carried out ‘with’ or ‘by’ people affected by health conditions and members of the public, rather than ‘to’, ‘about’ or ‘for’ them. (INVOLVE)

We expect all applicants who are seeking funding from us will have involved people affected by stroke in the planning and development of their proposals. This involvement must be meaningful, and we expect that it will continue, should the application be successful.

Working with people affected by stroke

We work with a group called Stroke Voices in Research. This group consists of people affected by stroke (stroke survivors, carers and family members) who want to be involved in research. If you’re looking to involve people affected by stroke in your research, we can connect you.

To access support, you must be planning to submit your research to a Stroke Association funding scheme for consideration, or be already funded by the Stroke Association. 

Please note that the Plain English applications that you submit to us are reviewed by members of our research involvement group. This is to ensure that we’re funding research that is important to people affected by stroke. They want to see evidence that you have involved people meaningfully and that you will continue to do so if your application is successful.

Why involve people affected by stroke in my research?

People affected by stroke are experts in what it's like to experience and live with stroke.

When it's done well, PPI can:

  • Improve the quality and relevance of research.
  • Provide a different perspective on research.
  • Ensure accountability for public or charity funding.
  • Empower patients and carers, providing a route to influencing change and improvement in issues which concern people most.

(Source: INVOLVE)

Research has also shown that PPI in clinical trials leads to improved patient enrolment, and that studies that involve people with lived experience to a greater extent are more likely to achieve recruitment targets.

How can I involve people affected by stroke in my research?

People affected by stroke can be involved throughout the research cycle.

Areas that people affected by stroke can be involved in include:

  • Prioritising topics for research.
  • Identifying relevant outcomes for studies.
  • Developing plain English summaries of research.
  • Identifying potential ethical issues a study may face.
  • Developing participant facing information (participant information sheets and consent forms).
  • Helping to manage the study (through membership of a Steering Group).
  • Helping to analyse and interpret the result of a study.
  • Sharing results with a wider audience.

These are just some examples - how people affected by stroke are involved will vary between research projects.

Get in touch

If you’re interested, have any questions or would like to know more, please contact Laura Piercy, Research Engagement Officer, via research@stroke.org.uk

We’ll send you a short form to complete with details of the planned research and how you want to involve people. This information will then be sent on to members of our group who would be a match for your research.

If you're new to Patient and Public Involvement in research we can also provide advice, guidance and support to help you to involve people affected by stroke.

We will not support any request made less than eight weeks prior to any planned involvement activities or funding deadlines. This is to ensure we have sufficient time to support a meaningful request that can influence an application/project. We recommend that you apply early for the best chance of success.  

Please note this is not a route through which you can recruit participants to your study. For help recruiting participants, please email research@stroke.org.uk separately.

Disclaimer

The Stroke Association will endeavour to find a suitable individual to be involved in your research, but this is very much dependant on availability and individual suitability. We cannot guarantee that we will be able to propose suitable candidates in all circumstances, nor can we guarantee that we will be able to support each request received.  We will endeavour to respond in a timely manner and, during times of high demand, we will operate on a first-come-first-served basis.

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