Guidance for researchers for completing PPI sections for NIHR Grants

The role of ‘PPI lead’

‘There should be a named person with appropriate skills and experience who is responsible for leading the PPI element within the project. This role should be an adequately costed and resourced research team member who is able to manage the PPI plans and related activities.’

Named person – this can be a person already listed in the application eg. The lead applicant, a fellow/associate, public co-applicant or research coordinator, or a standalone role. They do not need to have already been appointed – the funds to cover the post can be included in the funding application for later recruitment. It goes without saying that the appointed person should be aware of the fact they are named as the PPI lead!

Appropriate skills and experience – there is an acknowledged scarcity of experienced PPI practitioners, but skills and experience that are appropriate for PPI are widely transferable from related fields – for example, working with patients, charities or community groups could be relevant experience. The most important skills required are interpersonal – the ability to identify, build and support relationships between researchers and relevant communities and patient groups.

We have specialised training and support available on campus to support new PPI leads and increase PPI capacity. The NIHR Cambridge BRC PPI strategic lead is available to support recruitment, the development of role descriptions and to provide support and guidance to new (and existing) PPI leads. The PPI team run both introductory and specialised PPI training throughout the year with content relevant to all PPI practitioners.

Adequately costed and resourced – Good PPI takes time and has a large volume of administrative work that comes with it (organising events/activities, keeping in touch with contributors, arranging reimbursements, keeping records, assessing and reporting, among other things) and the PPI lead needs to be (FTE) resourced appropriately. As with much of research set up, PPI-related time is usually higher at the beginning of a research project. PPI activities themselves also require resourcing, and planned activities should be carefully costed within the funding application.

Leading and managing PPI plans – The PPI lead needs a solid understanding of the research project and a good rapport with the rest of the research team to be able to develop and lead an appropriate PPI strategy. Most importantly, they either need to have sufficient agency and trust within the research team to be able to implement the PPI and have a project lead and research team that is willing to work closely with them.

Completing the PPI section in applications

Please read the supporting information carefully to make sure you are fully answering this question. Most NIHR applications ask 2 main questions about your PPI: 1.) What PPI have you already done to inform this application and 2.) what PPI do you plan to do during the remainder of this research.

Detail is important – aim for information about the 5 W(h)s, Who was (will be) involved, what have you (will you) involved them in, when have (will you) you involved them, where in the research pathway have you (will you) involve them and how (what activities) have/will you involved them in? Why did you decide to do it that way?

Most importantly, you need to describe what you have done in response to the feedback gained through involvement. Specifics, specifics, specifics!

Not “we involved a number of patients throughout this project. They have provided excellent feedback”.

“Before we started writing this application, we met (via Zoom) with 5 patients that we recruited through our clinic and through a local patient support group. Their feedback has been incorporated throughout the application (details in the research plan) and they assisted in drafting and reviewing the lay summary. We also found considerable variation in their experiences, and they suggested we reach out to x patient support group with a short survey to gain a wider variety of experiences. We chose this approach because our planned intervention will be used in our clinic, and we wanted feedback both from patients who attend our clinic and from those with different experiences” etc etc.

Include details about the PPI you have already done

Outline how PPI has informed the development of the project so far. For example, involvement in shaping the research project outlined in the application, the study protocol, recruitment plans, data collection tools, information materials, outcome measures, follow-up, intervention design and delivery. Your public contributors can also support you in the development of your PPI strategy.

Include details about how you will continue to involve people throughout your project

Describe your plans for involving patients, carers and the public at each appropriate stage of the research project lifecycle. This might include being involved in recruitment, data collection, analysis, producing study materials, sitting on steering or oversight committees and sharing findings.

Demonstrate your PPI throughout the application

You can (and should) refer to your PPI throughout the application where relevant – for example when detailing the need for this project (your PPI contributors agreed it was important/patients brought it up in clinic), the project endpoints (determined in conjunction with your public contributors) etc etc.

Plan ahead for Stage 2

In the Stage 2 application you will be asked how the PPI will be managed, reported and evaluated. It is not necessary to provide the details for these in Stage 1, but these details are important to have in mind as you consider the role of PPI lead and design your PPI strategy.

Support for PPI Strategy Development

The NIHR Cambridge BRC PPI team is here to support you in the development and delivery of your PPI strategy. We are happy to meet with researchers at any stage of their applications or research projects to provide advice, support or signposting. We also have an extensive network across local and national NIHR infrastructure, research organisations and patient groups to help you find the information you need.

The PPI lead can also review PPI sections of research proposals and arrange for public feedback through the Cambridge University Hospitals Patient and Public Involvement Panel.