Where your voice matters: RCSI PPI Festival- Stroke Session with iPASTAR

The event themed ‘Your Voice Matters’ brought together the iPASTAR community where we circled back to the four pillars on which the iPASTAR programme was developed (Acute Care, Discharge from hospitals, Living well after Stroke, Costs of Care) and we heard from the patient voice which is central to our research. With guest speakers from our PPI panel, the IHF and The National stroke Programme, this was a rich opportunity to enhance our learning and discuss what is next for iPASTAR.

Arlene Wilkie, Director General of the Stroke Alliance for Europe recorded a wonderful video. The following written text is a copy of her speech.

My name is Arlene Wilkie, I am the Director General of the Stroke Alliance for Europe.

We are a membership organisation. Our members are stroke support organisations who provide care and support to those affected by stroke – one of our members is the Irish Heart Foundation. Examples of support include peer to peer support to help them understand more about their stroke and how to deal with it, how to get back to work, how to navigate finances, how to live life well after a stroke.

I think that we all agree – that when it comes to decision making about a persons treatment, care and support needs – it all should be based on the needs and wants of that person, it must involved that person and that person must be empowered to advocate for themselves.

In the same way as being at the heart of decision making, people with lived experience can be at the heart of research. Now, patient involvement in research is not a new concept but it still feels like a concept that hasn’t quite been embraced properly and fully.

True PPI in research means involving people with lived experience right from the[tart – so when you are developing your research questions – you want to ask people with lived experience about how important is this research to them, otherwise you may be doing research just for the sake of doing research.

You then want to involve people with lived experience throughout the project – from project or trial design, testing ideas and dissemination.

Doing involvement in this way will give your research true meaning and relevance and will ensure its effectiveness.

And it will also mean that those people with lived experience who have been involved can be the ones who can be your spokespeople to explain the importance of the research findings and why they should be used to change guidelines for example

If you want to do PPI – but you don’t include people in this way, it isn’t true PPI and could be seen to be tokenistic.

Now, doing this isn’t easy. It takes time. It takes planning and thinking. And maybe some training on both sides. But if you are going to do PPI – my call to action for you today is to do it properly – done properly it can really be very rewarding.

Now I know that I am preaching to the converted here – and that you are here today to listen and learn from each other.

I have looked at you programme – it looks really exciting with great ideas and presentations from the Irish Heart Foundation, a PPI champion and those involved in research. I am sure your day will result is a lot of discussion, debate and a way forward to really ensure that when you do PPI in research you can really say that your voice matters.

Finally, we had a fantastic graphic illustrator Robyn Deasy from Drawesome who captured the event, here is an image of her wonderful work.