Patient, Public and Stakeholder Involvement and Engagement: 2023 highlights

Posted on: 15 December 2023 by Dr Clarissa Giebel in December 2023 posts

This year, Patient and Public (and Stakeholder) Involvement and Engagement (PPIE) in our Institute has grown substantially. So much has happened this year - from our first Institute PPIE Showcase in March to the Faculty supporting us with national engagement events. Here are some of this year’s highlights.

Health Data Science (HDS)

It’s been a busy year - COMET launched a toolkit to support patient and public involvement in the development of core outcome sets. The toolkit was co-produced with patients and the public. Nicola Harman also worked with researchers in the LJMU School of Art and Design to develop creative methods to explore the experiences of public research partners and the impact of involvement – the first issue of Drawing on Experience – creative collaborations with experts by experience will be available online early in the new year. Fun Christmas fact: there’s  a new paper accepted in Research Engagement and Involvement on a printable public engagement advent calendar.

Primary Care and Mental Health (PCMH)

Much more PPIE took place this year, and more colleagues learnt about how to embed PPI in grant applications. Besides hosting over 120 stakeholders for our 5^th annual Liverpool Dementia & Ageing Research Conference at the Liner Hotel this October, we were honoured to welcome MP and All-Party Parliamentary Group on Dementia Lead Debbie Abrahams, and linked up our work with key national policy makers. Thanks to Wellcome funding, a group of us, with two public advisers and the Lewy Body Society, were able to co-produce a  boardgame on our research – the Dementia Inequalities Game! The game is now available, and we are busy marketing and evaluating it, including across PCMH, Psychology, and Health Sciences – thanks to Helen Marshall and Warren Donnellan for collecting the first student data.

Psychology

Liverpool Autism Hub was launched, led by Idalmis Santiesteban. This is a public engagement initiative that aims to bring autism researchers and the local autism community together by: Dissemination; Obtaining feedback from the autism community on what is important to them, to generate community-led research; Facilitate communication and connections between autistic people, parents/ carers of autistic children, relevant charities, educators and clinicians. Sara Waring and colleagues consulted with Merseyside residents to understand their needs and preferences for communicating information about local risks and emergencies, and areas for further research.

Health Sciences

The REACHE (Research Engagement And Collaborative Health Enquiry) project’s aims was to increase patient and public involvement from an under-represented group in research, specifically those with learning disabilities.  A multi-professional group of health academics and members of two local learning disability organisations (MOWLL, People First Merseyside) co-produced a short video to encourage those who undertake health care research to include a person with a learning disability to be a member of the research team. 

Public Health, Policy and Systems

Bridget Young has led a big data project with public advisers this year. Fran Sherratt published a recent paper with public advisers as co-authors, which is increasingly happening across the Institute – all public advisers should be co-authors on manuscripts and outputs.

NIHR ARC NWC

The Applied Research Collaboration North West Coast (ARC NWC) now has over 100 public advisers, who are meeting several times a year in their Public Advisor Forum, with advisers very active on numerous research projects and project ideas, developing research from the bottom up. The Advisor Forum is diverse and offers regular opportunities to advisors, who get reimbursed according to NIHR guidance. In the ARC, we have started an evaluation of public involvement and of the embedded Liverpool Dementia & Ageing Research Forum. The ARC Seldom Heard Fora are also regularly taking place, with the last one focusing on adoption and fostering.

Groundswell

Groundswell held an event with the Festival of Social Sciences called Healthy Parks, at The Florrie in November. They welcomed community park organisations to come along and use LEGO to explore how designs of our urban green spaces can result in better health for local residents. Groundswell also held its annual retreat in Edinburgh. There were a lot of interactive sessions over the two days asking people to share experiences, pool knowledge and co-produce strategies and plans for the next year.

Civic Data Cooperative

The team finished the first round of our community-led wellbeing data hub peer research project. Podcast, blog, and report available here. The CDC launched a Community of Practice on participatory data stewardship focusing on the best practice and challenges in involving publics in data projects.

Faculty

The Faculty PPE team has been fantastic in supporting IPH staff with attending and engaging with national public engagement events. Laura Winters and her colleagues supported many of us in giving a talk at the May Pint of Science event across Liverpool venues, organised Meet the Scientist events, including this October with hundreds of children and families visiting  the World Museum and learning about different science facts. The team has also helped with the ESRC Festival of Social Sciences events and many others, and as always are running their public engagement funding schemes. If you do have any questions about public engagement, do get in touch with the team.

2023 has been packed with PPIE activities across the Institute, and hopefully even more next year. It’s been great to see more staff applying for our IPH PPI Fund to support external grant applications (applications open anytime throughout the year). A big thanks to Department PPIE Leads for sending in their highlights – Helen, Warren, Laura, Selina, Emily, and Elly. Get in touch with any of us if you want to learn more about the different PPIE approaches, or want to write a blog in 2024. But for now –

Merry Christmas (or Frohe Weihnachten)!

Clarissa