Stroke Voices in Research (SViR) is a network of people affected by stroke who receive opportunities to shape research, which we define as research involvement.

NIHR defines involvement in research as being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. It is an active partnership between patients, carers and members of the public with researchers that influences and shapes research. 

This does not usually include forms or surveys without clear explanation of how this meets the definition.

To send a request to network members please complete the following form. Your answers can be rough and will only be used interally. We will use this to understand your planning and the projects relevance for our members.

You can also download this in Word and send it to Dan Taylor, Research Involvement Lead.

Eligibility Criteria

To be eligible for requests to Stroke Voices you need to be:
  • based at a recognised research institution (e.g. University, NHS Trust)
  • working / studying at Masters level or above.
  • planning activity no sooner than 8 weeks before you submit your request
  • running activity that meets the NIHR definition of involvement above
  • able to submit involvement plans that describe the activity you are recruiting for (we can support you to do this)
You should be able to explain clearly what will happen as a result of involvement and ensure clear plans to support this. 

We are happy to provide advice or guidance to support your plans and ensure your involvement is meaningful. If you would like to discuss aspects of your planning please email our Research Involvement Lead.

You will be asked to provide feedback to participants about the effect their input has had. We will also request some feedback for evaluation purposes.

You can find further details of how we prioritise and support requests at the bottom of this webpage.

If you have any questions, or would like to discuss your request before completing the form, please contact our Research Involvement Lead.
Is this an Involvement Request for...
We need to understand how the involvement intends to meaningfully influence and shape your research to ensure it fits our network's purpose of providing meaningful opportunities that fit with the NIHR definition of involvement.
You should have a clear plan for how your involvement will be designed, including: what you will be asking people to do, how you will support them to take part, rough timelines and activity design.

Supporting people to take part can include planning facilitation and adequate time into sessions, taking steps to understand and act on needs and support around activity, such as training or check-ins.

For more infomation and guidance you can use the NIHR Briefing Notes or CRUK PPI Toolkit.
Maximum 2 files.
200 MB limit.
Allowed types: txt, rtf, pdf, doc, docx, odt, ppt, pptx, odp, xls, xlsx, ods.
We encourage payment for involvement in alignment with INVOLVE guidelines. Please give an explanation if you are unable to pay collaborators for time. We don’t think anyone should be out of pocket as a result of involvement, so please confirm that you will be able to at least cover travel and other expenses and give your budget for this.
We expect everyone you involve to be offered feedback on the impact of their involvement following from activities and as future impacts arise. 

We will ask for a brief update at three & six months after recruitment, followed by a 1 ½ page final report at 12 months or project end.
This might include details of additional support you would like from the Stroke Association for involvement.

Prioritising Requests

We invite requests from all UK based stroke researchers. However, support will be dependent on capacity, alignment with the Stroke Priority Setting Partnership priority areas and alignment with the NIHR definition of involvement as an active partnership that influences and shapes research

We may prioritise assistance where the Stroke Association is either funding the research/researcher or where a funding application will be submitted to the Stroke Association or a co-funded partnership.

Where we are unable to support requests we will always offer a meeting with our Research Involvement Lead to help identify other routes for recruiting to involvement.

SViR Requests Process

  • Once you return your completed form we aim to send confirmation of receipt and next steps within 5 working days.
  • If approved, we will arrange a meeting to discuss your information, explain the process and confirm an advert to go to the network.
  • We will then contact members of Stroke Voices in Research with details of the request, giving them two weeks to reply.
  • You will receive a spreadsheet of interested members’ details once this period is over and we will have a ‘hand-over’ meeting to discuss reporting, next steps and whether you would like any further support.
  • You will then be able to contact members directly to arrange the involvement. You will need to give members at least two weeks notice of any activity.
  • Please keep us informed of meeting dates, we may ask to observe these and may be able to support facilitation where requested. Our Research Involvement Lead can provide advice and support if needed.
  • You will need to feed back to members after activity to thank them for their involvement and summarise outputs from their involvement. We will ask for some basic evaluation and you might want to conduct further evaluation and/or ask for feedback yourself.

You will be asked for more comprehensive feedback at the end of the project and may be asked to join a SViR Meet-up of all our members to present on your experience.

Disclaimer

The Stroke Association invite requests from all UK based stroke researchers. However, support will be dependent on our capacity, requests' alignment with our definition of involvement and with the results of the Stroke Priority Setting Partnership.

Where requests do go through the network we 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.