Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications

Abstract

Background Patient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. Main body It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR’s work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning. Conclusion Focusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

Diversity in patient and public involvement in healthcare research and education—Realising the potential

“…Mathie et al 47 recently put focus on the ‘invisible’ work of PPI leads. De Semoni et al 48 highlights that ‘this expertise should be valued as a fundamental part of research delivery and should be appropriately and adequately costed in grant bids. The long‐term benefit of properly costed PPI is sustainable, well‐supported PPI that has a greater likelihood of achieving impact’.…”

Patient and public involvement and engagement (PPIE): how valuable and how hard? An evaluation of ALL_EARS@UoS PPIE group, 18 months on

“…A regular funding source is necessary for sustainable, enduring, and inclusive PPIE. As well as accessibility costs, funding is required to pay for involvement fees and travel expenses (38), staff time (39), materials and refreshments. PPIE needs to be accurately costed into each research grant.…”

Involving older adults and unpaid carers in the research cycle: reflections on implementing the UK national standards for public involvement into practice

“…Recent calculations by the author (CHJ) based on supporting travel costs, refreshments and vouchers for six members to attend a group meeting and excluding staff time amounted to £320 per meeting. Further work by De Simoni et al (2023) offers guidance on how to budget for PPI to ensure a sustainable and mutually beneficial model for all throughout the research life cycle.…”