The Role of Public Co-applicants and Public Involvement Leads in health and care research – FAQs

This will depend on the nature of the communication difficulty your PPI group is experiencing. You could get advice from organisations or practitioners that work with specific groups of people. Again, your the NIHR Research Design Service will also be able to offer advice and resources on this area as well. For example:

• if you are working with refugees for whom English is a second language then you could employ an interpreter

• if your PPI attendees are hearing impaired then you may need a sign language interpreter

• if PPI attendees have impaired speech, e.g. due to a stroke, then ‘response cards’ could be employed as a way for attendees at a PPI event to express opinions

This is a wide and complex area and training should be available for people working in such situations.

Contact your organisation’s Human Resources or staff training department and see if this training is offered.

The NIHR has developed a community engagement toolkit with advice on groups and populations underserved by research and less included in public involvement.

The answer to this question will depend on the group itself.

Ice breakers can be useful but remember that not all Public Contributors will appreciate them or wish to participate in ones that require them to share personal information. There are many ideas available online and there are no hard and fast rules. Make sure you pick something that is inclusive and will not make participants feel uncomfortable.

A simple approach might be the best e.g. asking people to introduce themselves / talk about how they found out about the PPI event.

It is important to undertake a training needs assessment with each public contributor to identify what areas/skills would benefit them in the public contributor role.

It will also be critical to understand the research team’s experiences of and training needs for working with public co-applicants and public contributors. Consider the use of buddy systems to support public contributors.

You may wish to develop and budget for a bespoke training programme specific to the research study.

This is a potentially complex area and should be negotiated with the person taking on the Public Involvement Lead role in conjunction with early discussion with the finance team/Human Resources, before the grant is submitted.

Different organisations will have different mechanisms and requirements around payments and the individual personal circumstances of the Public Involvement Lead will vary so it is not possible to give a specific answer.

Your regional NIHR Research Design Service may offer support, including a funding scheme for preparatory PPI work as part of the package of support and advice offered to clients.

Yes – PPI contributors should be ‘costed-in’ as part of the total research funding application e.g. if you are planning to have a PPI advisory group who you intend to involve at/advise on key points in the project then you will need to ‘cost-in’ that group e.g. venue hire, thank you payments, stationary for sending out materials to view etc.

Your regional NIHR Research Design Service may offer support, including a funding scheme for preparatory PPI work as part of the package of support and advice offered to clients.

More generally, you should check with prospective funders or your organisations/institutions to see if they have small awards that can be used for preparatory PPI.

In theory yes – for example, a member of staff could combine responsibility for PPI, liaising with PPI advisory group and PPI co-applicants, with another role e.g. leading a particular project work package. The Public Involvement Lead role can also be a joint/shared role with a public co-applicant or public contributor.

However, this will depend on the size, complexity and funding available for the research project e.g. for a large-scale multi-layered project it might be advantageous to have a dedicated Patient Involvement Lead.

A health professional who is a project co-applicant may also be the Public Involvement Lead. A PPI panel should always include some members of the public/patients, which we would expect to be the majority of the panel. A panel of professionals, or a mixed panel of professional and non-professional contributors may also be appropriate depending on the context of the research.

While PPI is normally interpreted as patients and/or public rather than HCP’s, the nature of a particular project might mean that HCP’s do qualify as a relevant PPI stake holder group. In such cases PPI advisory groups could be drawn from relevant professionals.

However, in such circumstances, you should always consider if patients/public can also be involved as well.

Further, where the range of your PPI contributors encompasses patients/public and professionals you may need to consider how you engage with these groups e.g. a mixed group of patients/public and professionals may not be appropriate as patients may feel unable to talk in front of professionals and vice versa, so separate groups might be required. This will depend on the nature of the project and the extent of the ‘costed-in’ PPI activities.  If in doubt, you can gain advice from the NIHR Research Design Service.

The Public Involvement Lead is the member of the research team with particular responsibility for coordinating, leading, running, and maintaining contact with your public advisers/PPI contributors. Whereas, public advisers are those who contribute to your PPI activities. Public contributors are people who contribute a personal perspective to the research based on their own lived or life experience.

The Public Involvement Lead is usually a full member of the co-applicant team and is responsible for delivering the Public Involvement strategy for a project. That might involve recruiting, supporting, and mentoring public contributors and running, reporting on and evaluating Public Involvement events. The Public Involvement Lead is often, but not always, a person with an existing academic, clinical or managerial role within a research organisation e.g. University or the NHS. They may also be a Public Contributor with appropriate experience of leading public involvement elements of research.

There is no set number – what constitutes an ‘appropriate number’ can be influenced by a range of factors e.g. size of project, funding available, nature of project and capacity to support Co-applicants within the team.

As a rule of thumb the number of Co-applicants is usually between two and four.

Note, don’t forget that you should include PPI advisory groups e.g. a project could have two co-applicants and also an additional PPI advisory group as well.

No – the way in which Public and Patient Involvement has developed in academic and industry has led to differences in terminology but almost all can be treated as interchangeable, for example:

• Public and Patient Engagement (PPE)
• Public and Patient Involvement and Engagement (PPIE)
• Personal and Public Involvement (PPI)

Some-times these can be shortened to Public Involvement (PI) or Patient Involvement (PI). Also, you may find definitions that substitute public and/or patient for: Citizen, Stakeholder, Service-User, or Lay-Person.

When considering time allocation for Public Involvement Lead role you should consider the following:

• this depends a lot on the project, the funds available and the type and complexity of the PPI – thinking through recruitment, including community engagement, support and mentoring for public contributors, the number and duration of events and the types of activities public contributors will be involved in – your local NIHR Research Design Service PPI adviser can help you think this through and assign and appropriate budget for time and money for your specific project
• when considering time allocation for Public Involvement Lead role you should consider the following, but a usual range is between a minimum 5% and 20% FTE:
• • how big is the project in terms of size, funding, delivery deadline and how does this impact the range if PPI activities?
  • will your Patient Involvement Lead need to train/orientate your PPI contributors?
  • what is your PPI strategy and what are you asking PPI contributors to do e.g. a large scale and/or multi-faceted PPI approach may require a large time commitment from your Public Involvement Lead?