The diagram below* gives a few examples of how you can include public members at all stages of the research cycle, and how they can contribute:

Diagram of PCIE in the Research Cycle

*Source: based on a diagram from the Health Research Board Ireland.

Looking at some of these examples in more depth…

Identifying and prioritising:

Including public members and listening to their opinions and recommendations, right at the start, at the planning stage, before you are ready to submit a funding application or decide on a research question, is a really good idea. It will help ensure that your research priorities are aligned with those of the individuals or communities your work focusses on.

Remember that many funding organisations now involve members of the public in commissioning research.

It is key to listen to people’s experiences of living with their condition/s, or services etc, before discussing together how these might be turned into research questions.

Check how much information is already available on your research topic and whether research priorities have already been explored, for example by visiting the James Lind Alliance.

Your local NIHR Research Design Service (RDS) has funding available to support pre-application PCIE if the application is to a national, peer reviewed funding programme. However, this does not usually apply to funding awarded directly by ARC KSS. Find out more from NIHR Research Design Service South East . You should also speak to your organisation or university to see if they have any funding available for public involvement. Remember, it’s important to be clear with the people you are involving about the fact that the funding process can be lengthy and that the research may not get funded.

Design:

Involving members of the public in the design of research is helpful because they can:

  • suggest ways that people can be involved at different stages.
  • suggest ways to ensure that equality, diversity and inclusion are addressed, ensuring public members come from communities the research is focussing on.
  • ensure research is relevant to local communities.
  • help with your recruitment process.
  • help you to develop your public involvement plans.
  • help develop written information in user friendly and plain language, which is appropriately targeted at specific communities.

Research steering groups or management committees should include public members. The public could be employed as members of the research team or even as co-applicants.  

Undertaking/management

Members of the public can get involved in a variety of roles in carrying out the research, such as:

  • undertaking library-based research.
  • carrying out interviews, as peer interviewers (consider who the ‘peers’ should be for your interviews, for example their gender, age, ethnicity or experience of using a particular service – ask your public contributors to give advice on this). Peer interviewing has been reported to strengthen the collection of qualitative data, making it more relevant and reliable.
  • helping to facilitate focus groups.

Think about what training and support, if any, would be needed for your public members to confidently carry out these roles.

Analysing / interpreting

Members of the public can be involved at this stage of the research cycle through working with the research team to interpret data and develop themes from the data.

Public members, and those with lived experience of the specific subject matter, may be able to provide additional insight into the data analysis/interpretation that researchers had not considered or help to explain an unanticipated outcome. Sometimes having public members comment on why an idea has come to the fore, may give a researcher a different perspective such as: why that theme came quite high up on a list of priorities.

Dissemination:

Work with members of the public to develop your dissemination plans – they will often have access to groups and forums that researchers are not aware of.

The NIHR tell us that involving people at the dissemination stage is more successful if they have also been involved at the earlier stages of the research because they benefit from a sense of ownership of the research and an understanding of the context and background. This means they will be more likely to disseminate the results to their networks, and help summarise the research findings in clear user-friendly language, ensuring that the information is accessible to a public audience.

Implementation:

From the word go, researchers need to be thinking about how their research findings will make a difference to people’s lives. Will the research findings lead to policies being changed or will it have an impact on how services are run?

The value of involving public members at the prioritisation stage is that their insights and opinions can be considered, in collaboration with other partners, when identifying the focus of the research. Consequently, they then have a vested interest in ensuring the findings are used to effect change. Members of the public involved in research are often passionate about change happening as a result of the research. Working with your public member may help you to establish how any findings can be used and how best they can be applied to real-world settings. When a public member is involved in all aspects of the research cycle they would be considered a co-researcher.

Links to Resources:

Public Co-Applicants in Research – guidance on roles and responsibilities developed jointly by the NHS R&D Forum, the Health Research Authority and INVOLVE.

Implementation Research in Health: A Practical Guide introduces basic implementation research concepts and language.

ARC KSS’s implementation team

Exploring Impact: public involvement in NHS, public health and social care research) (PDF) highlights the importance of training and support for public members.

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