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Deciding who to involve

A key message from funders is that all recruitment processes for PPI contributors need to be inclusive and reach under-served groups.

Deciding what knowledge, experience and skills are needed for the research is a good starting point, followed by who can provide this. This is an iterative process and researchers say that who to involve will often develop as the project progresses. The research questions and outcomes may also shift in response to the advice and experience of the PPI contributors.

PPI contributors need to reflect the population that a research study is aimed at. Often they will need ‘lived experience’ as a patient with the condition being studied, or be at risk of the condition, or from a community which is under-served in that area. It may also be important to speak with the family carer or support worker for someone with that condition, or with a professional from a voluntary organisation or charity which represents the condition being researched.

PPI contributors who do not have lived experience of a condition can also bring knowledge and skills e.g. experience of reviewing PPI on grants, plus an outside perspective or contacts for an under-served group.

PPI groups and recruitment websites

PPI groups and recruitment websites in Section 5 of this Guidance are a good starting point for recruiting PPI contributors. These groups can provide feedback and support across the research pathway. The advantages are that they are already up and running, with experienced and committed PPI contributors who are keen to be approached.

Examples are:

  • People in Research: This is a national website where people have registered their interest in taking up PPI opportunities. Researchers can also advertise PPI opportunities.
  • Shaping Our Lives: this organisation works with people, especially those facing the biggest barriers, to build better, more inclusive services and support. They can help you advertise your research involvement opportunity.
  • PPI groups in Oxford: Current PPI contributor groups for the University of Oxford and local NIHR organisations are there to offer support, advice and guidance at any stage of the research pathway and are an invaluable resource for researchers. Please contact the link person directly.

Advertising for PPI contributors

If no formal PPI group exists for the condition or issue being researched, the next step is advertising for a diverse range of contributors in the right places in an accessible way.

Researchers are advised to contact their communications team to check departmental protocols before making adverts public.

All advertising formats and channels have their pros and cons, in terms of ensuring inclusion for everyone and maximising diversity, so it’s worth using different ways to look for PPI contributors e.g. advertise on Twitter and directly contact a relevant support group.

Recent work with PPI contributors at the University of the West of England showed that people respond better to simpler adverts – less is more – and greater detail on projects can be discussed at a later stage. Co-creating communications with patient and public groups – ARC West.

Where to advertise

Actively seeking under-served people or groups in research and supporting them to get involved, means a more diverse group of PPI contributors are included. It also means recruitment may take longer and therefore cost more. It often requires building up a range of contacts and organisations in the community, working with gatekeepers and community leaders, targeting employers, contacting schools or finding specific groups of university students.

Places to advertise could include:

  • Arts projects
  • Blogs
  • Care homes
  • Charities and voluntary organisations – websites and mailing lists
  • Community groups
  • Disease-specific conferences held by charities
  • GP surgeries patient groups
  • Higher education colleges
  • Online forums – Facebook groups
  • Personal networks
  • Public engagement events
  • Social media: Instagram, Twitter, Facebook, TikTok
  • Waiting rooms in hospital clinics or GP surgeries – slides on TV monitors
  • Youth groups

Template 1: advertisement for PPI contributor

Become a Patient and Public Involvement Contributor!  

Could you help us to improve the research that we are doing into this [insert illness or condition]?   

  • Have you or are you experiencing [insert illness or condition] 
  • Do you care for someone with [insert illness or condition]
  • Do you work in the voluntary sector with people who experience [insert illness or condition]  

We are looking for people to join our [insert the nature of the group/work you are recruiting to]   

This work will involve you in [insert number of meetings per year] mostly lasting [insert timing of meetings] at [insert venue] 

The project is expected to last [insert months]  

You do not need to have any specific skills to join our research project – we are keen to work with people who have living experience of [insert illness or condition] and who are able to explain what that is like and contribute to our group discussions to help make our research better.  

We will reimburse all expenses that you have to help us with this work.  

We are able to pay Patient & Public Involvement (PPI) contributors for their time.  

The rates are currently [insert amount that most readily relates to the work that you have for them and the budget you have e.g.  £75 for a 3 hour meeting including preparation and follow up]   

If you are interested in this role then please contact [insert main link name, phone number and email]