The role of the public and patient involvement (PPI) lead

Note: this is relevant to domestic funding applications - you can find guidance for global health funding here.

Working with people and communities in the design, delivery and use of research is essential to achieving research inclusion and research impact and needs to be resourced effectively. 

For NIHR research projects and for most schemes, there is a requirement to have a named lead – often called the patient and public involvement (PPI) lead – with dedicated responsibilities for leading the work with people and communities proposed as part of a research application or scheme. Institutions leading or undertaking research often also employ engagement or PPI roles to support and facilitate PPI within and across organisations, faculties or departments. Adding the responsibilities of PPI lead for a specific project or scheme to those existing roles is not usually recommended, especially where the role cannot be backfilled.

Identifying the lead

Working with people and communities is not the sole responsibility of the lead. We expect every member of a team, including senior leadership, to value this work and share responsibility for planning, resourcing and delivering results in appropriate ways. The lead role can be undertaken by a suitably experienced and named member of the team, including any co-applicant that has another role in the project/scheme. The lead must have the relevant skills, experience, access to resources and the agency to manage and embed working together with people and communities throughout all stages of the work.

Planning and resourcing roles 

NIHR projects and schemes will vary considerably in type, size and scope, and work with people and communities varies accordingly. The staffing allocation and budget for managing and coordinating this work should be proportionate, and reflect this variation. There will usually be only one overall lead, but the level of work may justify more than one role to manage and coordinate the PPI. PPI responsibilities are different to other research management responsibilities, and as indicated below, can be very time intensive. Therefore the time allocation for the PPI lead should not be modelled on the time allocation for other research or team 'lead' roles. 

Engaging, and working in partnership with diverse communities - especially those underserved by research – in the design and delivery research and in mobilising knowledge, is an increasing priority for NIHR. Engaging and working with communities is different to working with individual patients, service users, carers and established PPI groups. Different skills, experience and approaches can be needed. Working with communities often involves partnering or collaborating with voluntary, community, faith or charitable organisations and groups, and it can take time to build and sustain these relationships. This work should therefore be carefully planned, integral to research delivery plans and accompanied by a sustainable budget. 

Leading work with people and communities – especially those who have been underrepresented in research (for example, homeless people, refugees) – can involve considerable “hidden work” and can be emotionally demanding. Supportive senior leadership, the provision of practical and emotional support and appropriate development opportunities, should be provided for roles who lead and support work with people and communities, and this needs to be planned and budgeted for in any application. 

Responsibilities of a PPI lead 

A lead role may include the following responsibilities, as relevant and proportionate: 

• Developing and refining over time, strategy and plans for working together with people and communities (involving the wider team and public/community members) which reflect  NIHR’s Strategic Commitments to Public Partnerships and are informed by the UK standards for public involvement
• Developing approaches and methods to widen reach and the diversity of perspectives, and to increase involvement of underserved communities 
• Recruiting people and communities and working with them to assess and address their development and ongoing support needs
• Putting in place appropriate induction and training as well as ongoing mentoring and support for the people and communities involved
• Ensuring that policies, processes and procedures are in place which support effective working together with people and communities in line with NIHR expectations. This includes fair and timely reimbursement of expenses and payment for involvement and making sure that reasonable adjustments are made where necessary 
• Coordinating the team's self-assessment of the work with people and communities against the UK Standards for Public Involvement. Setting improvement targets/monitoring against these 
• Developing and implementing appropriate evaluation, monitoring and reporting of PPI. For example, using a PPI impact log or GRIPP2 guidance
• Acting as a key point of contact for public contributors and community partners involved in the research
• Ensuring that people and communities receive feedback on the progress of work, the influence they have had and the difference it has made
• Working with the team, and people and communities involved, to evaluate work, prepare NIHR/institutional reports and support communications and dissemination

Further information

This competency framework is designed to highlight the capabilities required and encourage career recognition and progression for those in institutional/organisational PPI roles. Whilst it is not designed for the PPI lead role specifically, it might be a useful aide when thinking through the skills and experience required for a PPI lead role.