Beyond COVID-19: New directions for Public Involvement in Health and Social Care Research in the Midlands
Midlands Patient and Public Involvement and Engagement (PPIE) Network
The Midlands PPIE Network brings together professionals and representatives to discuss the importance of PPIE that is taking place across the region. The first regional virtual PPIE event ‘Beyond COVID-19: New directions for Public Involvement in Health and Social Care Research in the Midlands’ took place in March 2021 and brought together individuals to learn about the latest developments in PPIE, share ideas and best practice for such areas including empowering PPI representatives, plan for the future and to network across the region. All the sessions were designed to both share and improve PPIE practices to bring together professionals and representatives from across the region.
Organised and co-ordinated by the Midlands Health Alliance (MHA), an organisation flying the flag for the rich and diverse pool of clinical research expertise within the region, the first day featured Zoë Gray, Associate Director of Involvement, Engagement and Participation at the NIHR Centre for Engagement and Dissemination, known for shaping services and research as the key note speaker.
Other sessions included;
- ‘An Introduction to PPIE’ where the role of patients and members of the public participating in research studies was explained and discussed
- ‘Involving children and young people in research: Adapting to the virtual world’ which explored how the COVID-19 pandemic led to the standard methodology for involving and engaging the Young Persons Advisory Groups (YPAG) in healthcare research becoming redundant. The session shared the YPAG initiatives that the pandemic catalysed, barriers faced and lessons learnt.
- ‘Impact – The art of counting bees’ which looked at the basics of measuring impact and the role of evaluation in PPIE.
- ‘Approaches to Co-production in Health and Social Care’ introducing us to the key principles and values of co-production in research.
- ‘Creative approaches – From ticking the box to outside the box’ that explored the use of arts-based methods and how they challenge the system in which the industry works.
- ‘Diversity and Inclusion: PPI with BAME communities’ talking about some of the do’s and don’t’s when undertaking PPI with BAME communities.
- ‘Public Co-Applicants: Equal members of the research team’, a discussion about how there is still some uncertainty about the role of public co-applicants and what added value they can provide to research teams.
“The first event that brought together the Midlands PPIE community was a great success with almost 250 registrations. It was great to see attendees engaging with the sessions facilitated by professionals and representatives from the across the region with a lot of interesting discussion taking place. The MHA felt that it was important to bring this community together as PPIE is a very important part of developing health research and due to the success of the first event we look forward to co-ordinating more in the future.”
MHA's Operations Manager Lois Daniels
Event Attendee Feedback:
“When I saw the timetable I thought I would pick the ones that appealed to me but I joined the first one and didn’t miss any at all, I found every session to be enjoyable and informative and I feel I have learned a lot thank you all for your time and sharing your knowledge.”
“Think it's a great thing for the Midlands.”
“It was fantastic to hear from PPI professionals and contributor from across the region.”
“Very much enjoyed the event and hope it becomes an annual feature!”
“If anything I would have liked more sessions!”
“I think that the event was very important and insightful and would welcome the opportunity to attend future similar events.”
“Excellent value for time.”
“Really pertinent issues covered that go beyond PPIE in research and touched on all manner of inequalities and undervaluing of the patient/public voice in health and social care generally. Think this should become a regular event on the conference circuit and recommend it to trainee researchers and clinicians.”
“I was pleased with the variety of topics covered and feel that each of the speakers did the topic justice. It was a valuable learning opportunity and I am looking forward to the videos being posted to the website so that I can share them with others that I think would benefit from watching them.”
Session Recordings:
Public partnerships: COVID learning and future directions - Q&A
An introduction from the new NIHR Centre for Engagement and Dissemination (CED) which has replaced INVOLVE, covering its work and priorities, followed by an exploration of the changing context (COVID) for PPIE in health and care research and what we have learned about the impact on PPIE, with implications for the future direction of the work
Learning points:
How NIHR CED can support you in your work/how we can collaborate
National learning about how COVID impacted PPIE
Changing directions/focus for PPIE
An Introduction to Patient and Public Involvement & Engagement
Be inspired to get involved in research! Patients and members of the public provide a valuable contribution to research studies and organisations that carry out research. The unique views, experiences and insights of patients and the public can improve and raise awareness of research. This session will provide an introduction to how patients and the public can support and shape research through Patient and Public Involvement and Engagement (PPIE), with real life examples from both PPIE professionals and contributors.
Learning points
To gain an understanding of public involvement and engagement in research
To find out where and who to go to for more information
To find out what groups and activities are available in the Midlands
Who is this session aimed at?
People with little or no previous knowledge about Patient and Public Involvement and Engagement (PPIE) who want to learn more.
Involving children and young people in research: adapting to the virtual world
The COVID-19 Pandemic has brought about a variety of challenges for involvement in healthcare and social care research, which quickly led to the standard methodology for involving and engaging our Young Persons Advisory Groups in healthcare research becoming redundant.Overall, this session intends to share the YPAG initiatives that the pandemic catalysed, barriers faced and lessons learnt. Hear from our YPAG members themselves as they describe their experiences of being involved in research during the pandemic.
Learning points
The importance of involving children and young people in research
Utilise different digital resources – try new things!
Stay in contact and keep people engaged – communication is key.
Who is this session aimed at?
Anyone looking to involve CYP in their work, and/or how to adapt this to remote involvement.
Impact - The art of counting bees
A short introduction to the basics of measuring impact and the role of evaluation in PPIE, building up to consideration of qualitative research for in-depth assessment and how we can use what we discover effectively. Full disclosure: this is a dry topic.
Learning points
When and where to evaluate Ideas for measuring impact
Consideration of making impact assessment impactful
Who is this session aimed at?
Beginners and less advanced practitioners looking to establish good basic systems and processes for measuring impact. More experienced practitioners may be interested in challenging their practice with use of rich data collection.
Approaches to Co-Production in Health and Social care
‘Co-Production’ is where the public, researchers and health professionals are empowered and supported better to work together. This session will introduce participants to the key Principles and Values of Co-Production in Research and discuss an example of Co-Production in Practice from NIHR ARC WM.
Learning points
Definition of Co Production
Key Principles of Co-Production
Key Features of Co-Production
Co-Production in Action – Case study from ARC WM
Who is this session aimed at?
The session is aimed at researchers, public involvement leads and public contributors that want to learn more about co-production in research.
Creative approaches - from ticking the box to outside the box
This session will consider the use of arts-based methods and how they challenge the system in which we work, exploring the success and challenges of an arts and subsequent community research project.
Learning points
Who do we currently successfully engage
How can we widen our reach
Why should we widen our reach
Who is your session aimed at?
Competent PPI practitioners looking to expand their skill set.
Diversity and Inclusion: PPI with BAME communities
The panel will consist of community development workers who possess extensive experience of working within BAME communities. They have also supported researchers from a range of disciplines to facilitate community engagement in PPI and research. The panel will also include two experienced Public Contributors from the Research Design Service (RDS) East Midlands. They have been working locally and nationally to develop with RDS Adviser colleagues, a toolkit on Equality, Diversity, and Inclusion in PPI and research. The session will be presented in the form of a lively and informative discussion between the panellists followed by a Q & A. It will be facilitated by Naina Patel, the RDS East Midlands PPI Lead.
Learning points
Some ‘Dos' and Don'ts’ when undertaking PPI with BAME communities
How to ensure your approach to PPI is empowering of communities
Examples of Good Practice
Who is this session aimed at?
Researchers.
Public co-applicants: equal members of the research team
Increasingly, members of the public are joining research teams as public co-applicants to help shape and deliver research studies. While guidance has been published recently, there is still some uncertainty about the role of public co-applicants and what added value they can provide to research teams. While this had been a positive and productive experience for many, others have had a disappointing experience, and more is needed to ensure that public co-applicants are equal members of the research team and are well supported. This session will provide an overview of the role of public co-applicants; hear from public members with experience of being a public co-applicants and of reviewing grant application including public co-applicants; and considers how public co-applicants should be best supported.
Learning points
To understand the role and value of public co-applicants
To appreciate the needs and expectations of public co-applicants as equal members of a research team
To consider how public co-applicants should be supported and the questions public co-applicants should ask about the role
Who is this session aimed at?
Public contributors considering being a public co-applicant Researchers considering inviting public co-applicants to a study Public involvement practitioners and staff supporting public contributors
Moving Forward – Panel Discussion (Q&A)
Meet our panel
As part of our Moving Forward question and answer panel we’re honoured to have experienced representatives from some of the Patient and Public Involvement groups across the region with us today.
Margaret O’Hara
Margaret has been PPIE in Research Lead at University Hospitals Birmingham since 2017. She supports PPI across the full range of research activity at UHB. Outside of her job, she does patient involvement and advocacy in Hyperemesis Gravidarum and is a trustee of UK charity Pregnancy Sickness Support. More recently her patient advocacy and research involvement experience has expanded to Long Covid, she is a founding member of grassroots patient campaign group Long Covid Support.
Liz Eglinton
Liz has kept very busy during her retirement with her Patient and Public involvement, having been a lay researcher and contributor on a number of projects. On a personal basis she has a history of cancer, endured three major operations and suffers from a number of chronic health conditions.
Andy Warren
Andy has been involved in PPIE since 2004 and he became a NUH Research & Innovation volunteer in May last year. He is very passionate about encouraging members of the public to become embedded in all aspects of health care and has continued with his PPIE activities virtually during the pandemic.
Tony Kelly
Tony is well known within the type 2 diabetes community for never having taken medication for the condition and controlling it by using diet and exercise alone for more than 17 years. He has been a Diabetes Strategic Patient Partner for NHS Birmingham & Solihull CCG since April and he’s a patient expert by experience with two universities as a PPI representative. Tony has been doing community focussed health awareness raising sessions locally, nationally and internationally for the past 9 years. Tony is also one of only two public members of the Scientific Advisory Board, Coronavirus Immunology Consortium (UK-CIC).