Hemianopia Patient Engagement Day

SEPTEMBER 2022 - DR HANNA WILLIS

Photo by Kalea Jerielle via Unsplash.

CAN YOU TELL US ABOUT YOUR PPI EVENT? 

In September 2022, we organised a research engagement day for stroke survivors with visual loss. This event was hosted at the Wellcome Centre for Integrative Neuroimaging (WIN). 13 stroke survivors and their family/partners attended on the day. The event was organised following the completion of a longitudinal rehabilitation study to improve vision loss post-stroke. Participants involved in this study and their family and partners were invited back to WIN for the day.

The aims of the event were to 1) present our current and past research that has focussed on stroke survivors with visual loss; 2) hold patient-involvement meetings to enable patients to influence future research; 3) discuss the value of creating a visual loss after stroke support group and 4) provide a social opportunity for patients with visual loss from stroke to meet each other.

HOW WAS YOUR PPI EVENT FUNDED? WHAT WAS THE FUNDING APPLICATION PROCESS/TIMELINE LIKE?

The event was funded through various schemes, including MRC Public Engagement Seed Fund (can be awarded to MRC-funded researchers) and NDCN Public Engagement Fund (can be awarded to anyone based at NDCN). The application process for both was easy and involved filling out a form. It was then assessed by a committee and awarded. After the event, the MRC requested a written report detailing the success of the event. Although the applications were easy, we did have trouble accessing the MRC funds to reimburse patients. Dr Hanna Smyth (WIN's Public Engagement Officer) was very helpful chasing this up for us and ensured that funds were accessed.

HOW WAS YOUR PPI EVENT EVALUATED, AND WHAT WERE SOME OF THE MAIN FINDINGS?

The main aim of the event was to increase understanding of visual loss post-stroke, to facilitate conversations about future research, and provide an opportunity for stroke survivors to meet one another. The event was evaluated by asking all attendees to rate their understanding of visual loss post-stroke and the aims of our research at the beginning of the day to provide a baseline level of understanding. A further survey was performed at the end of the day to measure any change. Another anonymous feedback survey was conducted, as well as a feedback session led by Dr Hanna Smyth, which allowed us to gather unbiased insights into the experience of participating in the study, which will be fundamental in developing future research. The final objective was achieved simply by being able to host the event in person, as stroke survivors with visual loss were able to meet one another.

HOW DID YOU AND YOUR RESEARCH BENEFIT FROM PPI?

Our research group benefitted significantly from the event. Firstly, the event enabled us to explain our research in an accessible way to the target population. Attendees provided anonymous feedback at the end of the day, which was helpful in understanding how to talk about our research in the future. In addition, during the day we organised discussions about previous and future research focuses. Attendees provided feedback on how future research could be improved, and where the current gaps in research are. The information gained from this event will be fundamental when organising similar events in the future and for designing future studies.

WHAT'S NEXT FOR YOUR FUTURE PPI PLANS?

Our future PPI plans will involve recruiting patients to assist with designing research studies. We hope that patients will be encouraged to provide support and advice in the directions that future research should take to have the greatest impact on the target population.

WHAT ARE YOUR TOP TIPS FOR OTHER RESEARCHERS PLANNING PPI EVENTS?

• Organise the event and apply for funding early.
• Speak to WIN's public engagement team for advice – they were amazing in helping us plan and apply for funding.
• Practice the event or any talks with friends and family (not neuroscientists!) to make sure you are explaining everything clearly.
• Sort out how the funders will allow you to access the money early, so you are ready to reimburse patients promptly.

Hear from the participants

Here's what some of the patients who participated in this research had to say about their experience:

“It's actually very nice to know that somebody wants to use my words...the sentiments expressed came straight from the heart.”

“It's also good to know that there is a positive outcome for stroke victims like myself who have suffered loss of vision. This is very much light at the end of the tunnel, no pun intended. I am very happy to have participated in some small way in assisting you in your work. My hope is that in the future, this work will assist in developing therapies that will give a realistic prospect of regaining at least some sight to those who have been more severely impacted by stroke than I, and indeed, the possibility of regaining full sight to those less so”

“Being part of the study, having the opportunity to work with you all, was an absolute delight. It’s fantastic to see your hard work published and hopefully the study will go on with some more great work. I’d be delighted to be involved in any work going forward”

“such a useful area of research, it certainly helped me greatly, and continues to do so”

“Thank you so much for everything. Not only was it wonderful to be part of such an important study but it was a bonus to get to do it with you all. It is an experience I will never forget.”

“I’m forever grateful to have been part of your research, as the improvements - how small they might be - established more stability and that little bit of extra central vision field to be able to fluently read, walk without bumping too much into people and yes… even drive a car again without fear and fully in control.”