Delivery of meaningful Patient and Public Involvement needs adequately funded staff
Guidance for budgeting Patient and Public Involvement staff costs published in article
A paper, published in the journal Research Involvement and Engagement, outlines the importance of adequate funding of Patient and Public Involvement (PPI) staff members to create flourishing PPI capacity and deliver significant patient and public benefit. There is little guidance about staff time needed to recruit and support lay members and researchers properly. This means that we still do not understand the true cost of including patients and the public in research, and we often under cost this in funding applications. The publication demonstrates the Asthma UK Centre for Applied Research’s application of best practice PPI activity, where it is embedded throughout the research lifecycle.
What do Patient and Public Involvement staff do?
Patient and Public Involvement is recognised as essential to rigorous health, public health and social care research. Many research funders require PPI to be included when researchers apply for funding. There are guidelines and resources to support and facilitate researchers in including meaningful PPI in their research. PPI staff costs are scantily mentioned in PPI guidance, though.
Skilled and supported PPI staff who have expertise and experience in collaborative PPI partnerships are required to deliver these meaningful PPI activities throughout the research cycle. The work carried out by PPI staff includes, among other tasks:
- Recruiting PPI lay members
- Tracking the involvement of multiple PPI members
- Providing training for PPI lay members, researchers and professional services staff
- Reimbursing lay members for their time
- Ongoing contact with PPI members to maintain relationships
- Coordinating lay involvement in research studies once funded
- Organising meetings between the PPI members, researchers and wider team members at all stages of the research cycle
Centre best practice PPI
The Centre’s PPI team consists of a PPI Senior Research Fellow, a PPI co-Lead, a PPI Research and Operations Assistant, with 4 co-lay leads. The team facilitates communication between the wider PPI members of the Centre, researchers and professional services staff. They are responsible for co-developing and spreading a common set of PPI norms and values within the Centre, using best practice as set out in the NIHR Standards for Public Involvement.
The culture that has been developed in the Centre is about including PPI throughout the research cycle. The PPI network is increasingly known and valued, and academic groups external to the Centre are increasingly contacting the PPI team to engage with our pool of volunteers. Provided the staff and lay members have capacity and there is Patient Advisory Group interest in contributing, other research groups can utilize this resource in return for reimbursement.
Budgeting for PPI staff costs in funding applications
The Centre has developed guidance to help researchers budget for PPI staff team costs, outlined in the table below.
|Project||PPI research fellow/PPI senior research fellow||PPI admin|
|Programme grants (> £1 m)||0.2–0.5FTE*||0.2–0.5 FTE*|
|Large projects (> £250 k)||0.2 FTE*||0.2 FTE*|
|Small projects (< £250 k)||Agree a number of days or hours for the project based on the PPI plan|
This guidance for budgeting PPI staff costs may be a starting base to stimulate discussion for future improvements of PPI budgeting tools. The creation of sustainable infrastructures for PPI begins with an appropriate team: without skilled PPI research and administrative staff to support all aspects of the PPI process, effective lay input cannot happen.
Dr Anna De Simoni, PPI co-Lead at the Centre and lead author on the publication, believes that this model could be adopted by other research centres, academic institutions or charities internationally. She said:
It is exciting to see how PPI activities can flourish when properly supported by appropriately funded people with expertise in the area. We hope that by outlining the appropriate support required for projects and programmes of varying sizes, active patient and public involvement in research prospers in the future
Read the paper
This publication is available in Research Involvement and Engagement
De Simoni, A., Jackson, T., Inglis Humphrey, W. et al. Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications. Res Involv Engagem 9, 16 (2023). https://doi.org/10.1186/s40900-023-00424-7
Read more about the Centre’s Patient and Public Involvement Platform