Public and patient involvement and engagement in research

• Justify costs and resources.
• Make recommendations and changes to improve future activities.
• Provide feedback to PPIE representatives.

Evaluating impact can be challenging, but you may wish to consider the following strategies:

• Asking evaluation questions at the end of the activity, for example, through a feedback survey.
• Keeping a reflection log of PPIE activities.
• Keeping a log of any changes made based on feedback and recommendations.

Delivery of PPIE activities

Some practical considerations which should be considered include: 

• Public representatives must be supported and equipped to undertake their roles and activities effectively.
• Some level of induction and training should be provided to all public representatives, although the extent and content of this will be dependent on the specifics of the research and PPIE activities.
• How will you deliver your PPIE activity (e.g. face-to-face or online)?
• How will you document and use the PPIE outcomes?

PPIE throughout the research cycle

PPIE should happen across all stages of the research cycle, from development to delivery, and it could be key for a successful grant application. Used effectively, PPIE can play a crucial role in delivering high-quality, impactful research.

How you choose to involve people, however, will depend on the nature of your research. You will also need to provide details in your funding proposal, including any potential PPIE-associated costs. Seek suitable individuals or groups as soon as possible, since PPIE is most effective when people are involved from the outset.

Identifying topic and planning

The general purpose of involving patients and the public at this stage is to increase the relevance and potential benefit of the research. You need to be able to articulate:

• What it is that you expect PPIE to deliver?
• Why PPIE is the best (or the only) way to achieve this?
• Why this input or contribution is of value to your research?

If the public have been involved in the planning and/or design of the research, and the ethical and practical issues have been considered from a public perspective, this can help demonstrate the relevance and importance of the topic or project to the target audience.

Carefully think through each phase of your research, considering whether PPIE might meaningfully be incorporated in that phase and the overall project. Some questions for you to consider include:

• Will PPIE make a difference to that particular phase or component of the research? Will it add value?
• Are there clear activities or roles that patients or public representatives could undertake?
• What diversity of public representation could be achieved? What perspectives might be excluded?
• Will the public representatives have the necessary resources, skills or time for the activities or roles? Could they be acquired?

Securing funding

Many research funders will ask you to clarify whether you have worked with a PPIE representative in developing your research proposal and consulted them in the development of your methodological approach. So make sure you list all details of PPIE activities, for example:

• Identifying topics for research.
• Challenging, refining and clarifying the research question(s).
• Reviewing research aims and objectives.
• Reviewing ethical considerations and potential solutions.
• Reviewing documentation for readability and content appropriateness.
• Defining outcome measures and relevance to the target audience.

Applying for ethical approval

Although ethical approval is not usually required for PPIE, you will be asked about your PPIE plan when you apply for ethical approval. PPIE can be useful when preparing your application as it can provide you with a perspective on ethical issues which you may not have considered as a researcher.

The questions below should help you decide if you meet the expected requirements for PPIE:

• Are public voices heard, valued and respected in decision-making?
• Are PPIE plans regularly monitored, reviewed and reported on?
• Is there visible and accountable responsibility for PPIE throughout the organisation?
• Are realistic resources (including money, staff, and time) allocated for PPIE?
• Is personal information protected by collecting and using it in a suitable way?

Recruiting research participants

PPIE can help with the development of the recruitment strategy, participant retention and relationship building between the research participants and researchers, for example:

• Review the recruitment strategy and take into account any ethical considerations when conducting interviews/focus groups, for example.
• Helping to define what is acceptable to participants and ensuring that methods are ethical.
• Improving the process of informed consent and ensuring that all information is available in plain English so that prospective participants can easily understand the research, what is expected of them, any potential risks, and how they (or others) might benefit from the research.
• Assessing the diversity of the population from which a sample should be drawn and advising on appropriate recruitment strategies to ensure this diverse population within a sample.
• Highlighting ethical concerns that may be specific to a particular community or patient group and draw attention to issues or concerns that researchers are unaware of, or do not recognise as important.
• Helping to ensure that the practical arrangements for participants are appropriate and practical.
• Highlighting when additional support may be required, for example, the need for a carer to accompany the participant, or a health psychologist, or whether incentives should be offered.

Collecting and analysing data

Adding an additional perspective to data collection and analysis through PPIE can enrich the research process, for example, by adding depth and breadth to qualitative data or increasing the methodological rigour and validity of a study. PPIE can, for example, be used in:

• Assessing the suitability of data collection methods from a patient and public perspective.
• Introducing new perspectives on data collection methods (e.g. questionnaires) to encourage investigation of further topics of importance that a researcher might not pick up on.
• Determining what research outcomes are measured and how they are measured.
• Supporting with data interpretation and validation, for example, identifying salient themes in qualitative data.
• Checking the validity of interpretations and conclusions from a public perspective.
• Highlighting findings of most relevance to the public.
• Helping design or review a topic guide, including taking part in a pilot interview.
• Helping decide which data collection method to use (e.g. face-to-face or online interview).
• Helping reviewing and interpreting documentary evidence from a public perspective.

Public representative conducted interviews and focus groups can also introduce a new perspective that allows or encourages interviewees to explore topics of importance that a professional researcher might not pick up on.

Disseminating, publishing and reporting research

PPIE can strengthen research communication, dissemination and implementation by ensuring the language, method and mode of communication used are relevant, make sense to, and reach the right audiences in an impactful way. PPIE can also support with the development of materials and the identification and access of further dissemination channels.

Example of PPIE in a study

The 2021 study ‘A multi-stakeholder approach to the co-production of the research agenda for medicines optimisation‘ (various authors) set out to generate a research agenda for medicines optimisation. In other words, to identify and rank the areas of research that should to be undertaken to ensure the safe, effective and person-centred used of medicines. Stakeholders involved included health professionals as well as patient and public representatives.

The study was undertaken in three parts:

• The first stage comprised a research topic-generation exercise. This included patient and public representatives as well as other stakeholders. All participants in this process had equal opportunities to contribute suggestions and topics to the process.
• The second stage involved the collation and circulation of suggestions from the first stage to a wider group of stakeholders, which also included patient and public representatives. The goal was to include a representative (and equal number) of stakeholders, during which each participant was asked to rank the importance of all the items listed.
• The third and final stage of the study involved a one-day event where stakeholders participated in a series of whole-group and smaller-group discussions, and then voted to generate the overall list of research priorities according to each participant’s rating of the importance of the individual topics.

Whilst the purpose of this study was to generate one overall ranked list of research priorities, the results revealed significant differences between the ranking of priorities from patient and public representatives and non-patient and public representatives. For example, ten of the top 20 priorities were suggested by patient and public representatives and would not have been included had there been no patient and public representatives involved.  

The example demonstrates the importance and value of adopting an inclusive approach with agenda-setting for healthcare and the difference PPIE can make to the outcomes of a study.