30 November 2023 10am - 12pm
Background
A 'Necessary Conversation' event was held with NIHR leaders to explore recent evidence on 'the hidden costs of PPI' that prevents it realising its full potential in health and care research.
This session was led by people from the public partnerships workforce in NIHR-funded programmes and organisations. They brought together findings from their recent research and experience. This was an internal event to raise awareness among NIHR senior leaders and explore how they can better understand, recognise, value and resource ‘hidden’ and often labour-intensive public partnerships work.
Bella Starling, the Director of VOCAL, chaired this session and set the scene with the research and strategic context of the public partnerships workforce. The session started with presenters outlining key challenges and hidden costs and labour to do public involvement, and calling for visible leadership to address these challenges.
Magdalena Skrybant provided insight into the day in the life of a public involvement lead, highlighting the strategic and operational balance, and varied skills that are needed. This could lead to over-dependence on individuals to build relationships with people and communities, at the expense of sustainable, cross-organisational approaches.
Stan Papoulias presented their research demonstrating the challenges that arise from trying to work collaboratively within systems that were not set up for ongoing, bilateral partnerships with people and communities. This led to individuals having to navigate challenging funding timelines and balancing short-term contracts of public involvement staff, while taking time to build meaningful relationships and trust with people and communities.
Elspeth Mathie’s findings cautioned that some NIHR initiatives to strengthen public partnerships can have unintended consequences and increase the burden on the public partnerships workforce rather than encouraging a whole system approach. She found that while it was important to provide feedback to ensure public contributors understood the influence they had on health and care research and maintain relationships, this task fell largely to public partnerships staff.
Finally, Polly Kerr and Paula Wray presented some potential solutions, including a competency framework that resulted from a survey of the national public involvement workforce (mainly working in NIHR-funded organisations). The framework articulates the skills and capabilities that individuals need for this role and the potential for career progression, and described the role the NIHR can play to support this.
Recommendations
The recommendations below have come from the presentations and discussions that took place during this Necessary Conversation. The recommendations aim to strengthen support for, resources for, and reporting on public partnerships that ensure the reach, relevance and quality of health and care research.
- Strengthen and develop sustainable support for the NIHR public partnerships workforce
- Articulate the core competencies and skillset needed for impactful and meaningful public partnerships by encouraging organisations and individuals to use the framework;
- Develop and strengthen public partnerships leadership in the NIHR through training programmes, fellowships, and convening spaces for the public partnerships workforce;
- Provide more visible leadership for the NIHR public partnerships workforce, including and beyond the forthcoming strategic commitments for public partnerships 2025-2030;
- Enable public partnerships workforce to input into the design of funding calls, including deciding timelines for applications.
- Provide and encourage better resourcing for public partnerships
- Commit ring-fenced national or regional funding for public partnerships initiatives, including through specific funding calls;
- Provide clear messaging to NIHR-funded individuals and organisations that public partnerships require cross-organisational commitment and action, including through accurate and transparent budgeting and allocation of funding;
- Establish specific roles for the public partnerships workforce (in addition to public contributors) on panels that review and award funding applications, and evaluate how these work.
- Encourage accurate reporting of, and learning from, public partnerships
- Amplify regional examples of approaches to public partnerships and share learning of what works, for whom and why;
- Encourage funding and award holders to share learning from what has not worked, including through questions the NIHR may ask through funding monitoring processes.
Programme of the day
PART I
Welcome and Introduction: What we hope to achieve (Dr Bella Starling, Director Vocal, Professor of Inclusive Research, Wellcome Trust Engagement Fellow,
Manchester University NHS Foundation Trust)
Presentations
What does a patient and public involvement lead do? ‘A day in the life’
Dr Magdalena Skrybant (NIHR ARC West Midlands PPI/E Lead, Midlands Patient Recruitment Centre PPI/E Lead
“It’s so much more work than you think it is” - tracking the labour of the NIHR public involvement workforce
Dr Stan Papoulias (Survivor Researcher, Research Fellow in PPI NIHR ARC South London)
Improving communication in patient and public involvement/engagment: feedback
Dr Elspeth Mathie (Assistant Director, Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire, Co-lead Inclusive Involvement in Research Theme, NIHR ARC East of England
Career development and training for the patient and public involvement/engagement workforce
Dr Paula Wray (Senior Manager, NIHR ARC Oxford & Thames Valley)
Polly Kerr (Patient and Public Involvement Manager, Nuffield Department of Primary Care Health Sciences)
This section included introduction of the development of the competency framework led by Oxford and TV NIHR colleagues with collaboration from the University of Manchester Centre for Primary Care, ARC South London and public contributors
Recommendations and a proposed way forward (Dr Bella Starling)
BREAK – 5 minutes
PART II: GENERAL DISCUSSION
Discussing actionable solutions, including next steps – chaired by Dr Bella Starling