Published: Monday 26 June 2017

Today, we held an exciting day of training for our early-career researchers about Patient and Public Involvement (PPI) in stroke research. The day was chaired by Laura Piercy, our Research Engagement Officer.

Bogna Drozdowska, Madeleine Harrison and Niki Chouliara during a group task

What is 'involvement' in research?

“Research that is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them,” INVOLVE.

It's when patients, carers and members of the public are active partners in research rather than the subjects of research.

Why is Patient and Public Involvement (PPI) important?

PPI can improve the quality and relevance of research, ensure accountability for public or charity funding, and can empower patients and carers by providing them with a route to influence change and improvement on issues which concern people the most.

What happened during the training day?

Dr Celia Woolf discussed how PPI shaped the EVA Park project

In the morning session, Dr Celia Woolf, City University of London, gave an insightful talk about PPI in the EVA Park Project.

EVA Park is funded by us. It provides stroke survivors with aphasia with an online virtual platform to help them with rehabilitation of their communication abilities.

Dr Woolf shared how EVA Park used a 'participatory design' by which stroke survivors acted as consultants in the design process with the researchers. This meant that rather than responding to initial ideas from researchers and giving feedback, they were active shapers of the research design. 

She also shared how some of the typical tools used in consultation processes, such as questionnaires, were not fit for use with people with aphasia. Therefore alternative methods were used, such as consultants keeping photo diaries of situations they found themselves in their daily life that they wanted to replicate in EVA Park.

This talk was followed by an interactive session to help attendees understand how and when to involve people in their research, including best practice.

Ben Beare and Emma Pilkington consider how to involve people in research

After lunch, Marney Williams gave an impassioned talk about the patient and public perspective of PPI, which invited a whole range of questions from the audience, and follow up later in the day. Marney is a stroke survivor and member of our Service User Review Panel (SURP) who work with us to set research priorities, decide which research to fund, and consult on developments in our research.

In the late afternoon, attendees took part in interactive sessions on how to communicate well with the people they involve in research, paying particular attention to those stroke survivors with aphasia, and also received advice and tips on how to plan involvement in their own research.

Marney Williams (front, second from right) with some of our fellows in attendance

The day ended with a networking session where presenters, attendees and Stroke Association staff all got to talk about the day, and how we would keep in touch on key points of interest and work together moving forward.

Find out more

To find out more about Patient and Public Involvement (PPI) in stroke research, email us at research@stroke.org.uk

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