Blog – How PPIE involvement can Improve a Conference

Patient and public involvement and engagement (PPIE) is an incredibly vital part of formulating new scientific questions and understanding how important your research is to those it affects the most. But as a basic scientist, utilising PPIE can be rare and foreign thing. In a great step forward, more and more emphasis is being placed on PPIE in medical research grants. At a recent conference, I was delighted how PPIE was implemented, and in this blog, I will discuss the experience and benefits of it.

On the 4th and 5th of March, I attended the UK Dementia Research Institute (UK DRI) Vascular theme ECR conference in the Royal Society in Edinburgh. This was my first time attending this annual meeting, and unlike other UK DRI events which host only members of the 9 centres of the UK DRI, this meeting had a mix of approximately fifty UK DRI and non-UK DRI ECRs who specialise in brain-vascular research. Attendees represented many universities, including those from Bristol, Sheffield, Manchester, London, Cambridge, Glasgow and Edinburgh – I thought this open structure really benefitted the attendees and emphasised expertise of the ECR, rather than their host institution. This year’s meeting theme was “Pathways to Translational Collaboration”; collaboration which extended to the inclusion of PPIE throughout the whole meeting.

Caught up in the nitty gritty of our work, it is easy to forget why we do our research, and who we are hoping to benefit.

At the forefront of this conference was lived experience volunteers, Joanie Scott and Andy Wilson, who both participate with various initiatives with Stroke Association. Stroke is a risk factor for developing dementia-causing diseases and intertwining research on these topics is important.

Who can be involved in PPIE? Members of the public include patients, family members, and carers. They also include people who use social care, people from patient or carer organisations and anyone who could be affected by the research or its findings.

The meeting opened with a talk from Joanie, a stroke survivor, who spoke eloquently and positively about the journey of her daughter, Sarah, who had a stroke in school at the age of 18, caused by an undiagnosed heart defect. Although she was able to regain physical mobility, Sarah developed aphasia, a lesser discussed symptom post stroke which affects the ability to speak and communicate. Two years after Sarah’s stroke, Joanie herself had a stroke while being a full-time carer for her daughter.

Joanie emphasised the value of how people communicated with Sarah, and the difficulty people have in disconnecting someone’s ability to speak with their intellect.

Joanie has been heavily involved in PPIE, being chair of the Stroke Associate Peer Support Group, and sitting on various grant review panels, and this acute understanding of the importance of communication seems to be at the forefront of her PPIE work.

We also heard from Andy at the meeting, another stroke survivor, and a carer for his father who is a multiple stroke survivor and has vascular dementia. Andy is a part of Scotland’s “National Stroke Voices”, as well as “Stroke Voices in Research” which involves reviewing grant applications for the Stroke Association. Andy really placed an emphasis on the importance of language in medical research. For example, knowing when it is appropriate to use the word “patient”, and ensuring research is carried out with, not on, participants. Through PPIE engagement, Andy has also come across many research proposals and had advice for ECRs when thinking about future research. Andy described being acutely aware of how most medical research has been carried out on white men, and encouraged us to not only expand our own study recruitment, but to really think about how we can encourage diverse participation in research.

Personal stories help researchers caught up in the knitty gritty of work, why we do our research, and who we are hoping to benefit.

Speaking with Joanie and Andy later, I was curious if participating in PPIE has made them more or less optimistic about the fields that they contribute to. They both independently talked about how the funding situation for vascular diseases is low, and they worry that funding is a sticking point where good researchers will be lost from the field. Andy is specifically aware of this, being in the process of completing his own PhD in criminology and having awareness of the funding landscape for academia. Despite this, they are uplifted by the excitement and determination of the young ECRs they were meeting at this event, and whose work they hear about in grant review panels.

Taking advantage of PPIE volunteers being at the meeting, ECR speakers were asked to pitch their presentations at an accessible level for a lay audience, to avoid jargon and give thorough explanations to unfamiliar terminology. As an attendee coming from a more Alzheimer’s disease background, I found this extremely useful, as talks covered a huge range of topics, such as cerebral small vessel disease and heart biology, and modalities from imaging biomarkers to complex rodent models. I asked Joanie and Andy if they felt as though they could understand the talks. Although several were still too in depth and niche, overall, they thought people did a great job. They judged the most accessible talks and mentioned that it was a very difficult decision! I think these criteria being implemented at more meetings could be beneficial to all attendees, particularly in small meetings where there are no concurrent sessions. It encourages people with different backgrounds to engage more and there was an excellent range of questions for the majority of speakers. Complimenting talks with more in-depth posters also allows attendees with more detailed knowledge to have longer discussions afterward.

Aside from ECR talks, a primary focus of this meeting was the “sandpit sessions”, where attendees were grouped by their broad area of interest, and asked to come up with a grant proposal for a pilot programme. We had several dedicated sessions throughout the two days, and Andy and Joanie circulated to give groups feedback on their ideas. In my group, Andy was particularly interested in ways we can increase diversity of our participant pool, with both Andy and Joanie reminding us to consider when participants could attend for a study intervention, and was there a way we could make participants lives easier. These suggestions certainly enhanced our study design. Moreover, they were not intimidated when we discussed a rodent study and were well able to give input and suggestions here too, showing advantages of involving PPIE in preclinical, as well as clinical work.

There is of course a personal cost to people who volunteer for PPIE roles, and something which scientists should not take advantage of. On top of practical issues like travel time, time away from home or work, sharing your story can be emotionally tolling and should not be taken for granted.

Overall, the implementation of PPIE at the conference was a success. I personally found the ECR talks more engaging without intensive field-specific terminology, and I gained a new perspective on study design. I was delighted to be involved with this inclusive event and think that PPIE involvement should be something all scientists strive to implement more throughout all stages of their research.

Clíona Farrell

Author

Dr Clíona Farrell is a Postdoctoral Researcher in the UK Dementia Research Institute at University College London. Her work focuses on understanding neuroinflammation in Down syndrome, both prior to, and in response to, Alzheimer’s disease pathology. Originally from Dublin, Ireland, Clíona completed her undergraduate degree in Neuroscience in Trinity College, and then worked as a research assistant in the Royal College of Surgeons studying ALS and Parkinson’s disease. She also knows the secret behind scopping the perfect 99 ice-cream cone.

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