NIHR defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.National Institute for Health and Care Research
It is vital that people affected by stroke are involved in research as collaborators throughout the research process, from setting priorities to helping to analyse results and inform their translation into practice.
We have seen how active partnerships between people working and living with stroke can test, improve and embed research to achieve the greatest impact.
This means that we champion and support involvement across all stroke research, working to ensure the voice of lived experience can shape and influence projects at all stages. We also ensure this in our own work, such as through the Stroke Priority Setting Partnership.
Please read the sections below to find out more about how we define, support and showcase best practice involvement.
“Stroke survivors and carers help keep me focussed on the problem at hand, identify which bits are most important and also show me where there are more opportunities to involve people..”Graham McClelland, Stroke Association Postdoctoral Fellow (2020 – 2023)
Please note this is not a route through which you can recruit participants to your study. For help recruiting participants, please visit this webpage.
We work with a group called Stroke Voices in Research. This group consists of over 100 people affected by stroke (stroke survivors, carers and family members) who want to be involved in shaping research and how it is done.
If you’re looking to involve people affected by stroke in your research as active collaborators to shape and inflence how this is done, we can connect you.
To access support you will need to check your eligibility and complete the questions here. We will then arrange a meeting and develop this into an advert to be sent to the network.
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 sufficient time to support a meaningful request that can influence an application/project. We recommend applying early for the best chance of success.
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, providint6sdag a route to influencing change and improvement in issues which concern people most.
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.
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. The design of involvement activity can also vary depending on the people and purpose, from groups and workshops to art partnerships and other creative collabroations.
We are developing guidance to help develop and communicate effective plans for involvement in stroke research applications. In the meantime please read the NIHR Guide to Public Involvement in Funding Applications.
How are people affected by stroke involved in Stroke Association Funding Decisions?
People affected by stroke review applications as lived experience reviewers on all our major funding schemes. They also sit on decision panels to make funding recommendations alongside academic reviewers.
Our lived experience reviewers support our decision-making focussed on:
- the impact of research and outcomes on people affected by stroke
- the quality of patient and public involvement
- the quality of plans for people affected by stroke in research trial participation
- the clarity of plain English descriptions
- plans for dissemmination of research
What support does the stroke association offer for involvement in funding applications?
You can send involvement plans to members of Stroke Voices in Research to review over email, provided this is submitted six weeks before the grant deadline.
Our Research Involvement Lead can provide advice on involvement in stroke research funding applications. He will also comment on plans and involvement drafts given two weeks’ before the grant deadline.
We are very busy around grant deadlines so are often unable to arrange focus groups to inform applications. If you know a round is likely to come up we recommend getting in touch before these open for a better chance of being able to support requests.
We provide advice and support for involvement at all stages of research and experience, whether you are considering how to get started, have questions about work you’re planning, or are looking to develop existing practice.
Please contact our Research Involvement Lead, Dan Taylor at firstname.lastname@example.org who can set up a 45min meeting to discuss any aspect of your involvement planning or work.