Planning for patient & public involvement

Potential benefits of PPI in research might include:

• Defining a more relevant scope for your COS study
• Designing more accessible research materials (e.g. refining interview topic guides or the wording on Delphi surveys, so it is clearer)
• Using a broader range of patient recruitment and retention approaches
• Understanding potential ethical considerations
• Interpreting your research findings from alternative viewpoints, for example, involving patients in interpreting qualitative interview transcripts to explore which outcomes should be included in the consensus aspects of your COS.
• Distributing your research findings to research participants and the general public using accessible approaches.

Relevant PPI resources

• Brief videos explaining the potential impact of PPI in wider research are available.

Planning for PPI takes time and resource. To maximise the potential benefits of PPI and avoid tokenism, we recommend that you involve patients / the public from the outset of your study. This will help you design your COS study through all stages, from the initial idea to disseminating your results and ultimately promoting COS uptake.

When planning for patient involvement in your COS study, consider questions like:

• Who are our patients/public – for example, might they be carers, children and young people, the general public etc.?
• What might the public research partner(s) (PRP) bring to our COS study?
• What impact could the PPI experience have on the PRPs in our COS study?
• What funding is likely to be available to support PPI in our COS study and how can we access this?
• What model of PPI are we hoping for? For example, some studies might have a separate PPI panel, others might have PRPs as team members on a study management group, others have a mixture of such approaches – or do you have a different model in mind?
• What skills/experience will be important for the public research partners to have?
• How will you and the rest of your research team support the PRP(s) throughout their involvement?

Relevant PPI resources

• Guidance on co-production is available from the NIHR in the UK
• The International PPI Network hosted a webinar on Co-production in action
• This publication explores ‘who’ to involve in your research.
• The Standards for Public Involvement in Research have been developed in the UK and are designed to improve the quality and consistency of PPI in research.
• General guidance on PPI – Examples of general guidance on PPI in research include that developed by the NIHR in the UK, by SPOR in Canada and by  PCORI in the USA.   Other countries may well have other guidance documents. The International PPI Network hosted a webinar entitled Patient and public involvement in research: What, why and how?

The following issues will need considering when planning for PPI in your COS study:

• Costing for PPI
• Finding PRPs
• Explaining your COS work to potential PRPs
• Explaining PPI in research to potential PRPs
• Recruiting PRPs
• Supporting PRPs throughout your COS study
• Evaluating PRPs’ experiences of the study and its impact on them
• Involving special groups

Relevant PPI resources to help you address can be accessed using the links above.

Costing for PPI – relevant PPI resources

• Every country is different in terms of the rules for compensating public research partners, for example, compensation may not be allowed in certain countries and benefits and tax systems. Please explore the rules within the context of your own country. Three examples of payment guidance are from the NIHR in the UK, from SPOR Evidence Alliance in Canada and from PCORI in the USA, which has two documents: Budgeting for Engagement and the  financial compensation resource.

Finding PRPs – relevant PPI resources

• Countries may have developed specific ways of promoting opportunities for involvement / engagement, for example the People in Research Network in the UK. 
• Cochrane Engage is an international volunteer hub that aims to bring together people across the globe who need assistance with health research. The hub can be used by researchers who need help finding public research partners for their studies. You can post a public involvement / engagement opportunity as a task in the hub. You will be asked to complete a proforma explaining more about the opportunity and detailing the kind of experience your public research partner needs to have. Cochrane Engage is open to all health research organisations with a free Cochrane account.

Explaining your COS work to potential PRPs – relevant PPI resources

• Animation explaining what core outcome sets are (with subtitles in various languages)
• Plain language summary explaining what core outcome sets are
• Glossaries relating to health research may be useful for explaining general aspects of research, for example SPOR, the NIHR and the Global Health Research Network.

Explaining what PPI is – relevant PPI resources

• This animation explains PPI in COS studies 

Recruiting PRPs – relevant PPI resources

• A potential template of a PPI in COS advert that you can adapt – Coming soon
• PPI in COS Study – a remit document – Coming soon
• A potential template PPI in COS expression of interest form – Coming soon

Supporting PRPs throughout your COS study – relevant PPI resources

• The Centre for Research in Public Health and Community Care provides a resource to help researchers provide feedback to public research partners.

Evaluating PRPs’ experience of PPI and the impact of PPI – relevant PPI resources

• The University of West England have produced guidance on evaluating PPI

• McMaster University, Canada have produced the following Patient and Public Evaluation Toolkit

• The Public Impact Assessment Framework (PiiAF) has been produced to help researchers assess the impacts of involving / engaging members of the public in their research

• The International PPI Network hosted a webinar on impact in PPI/E.

Involving special groups – relevant PPI resources

• A Top Tips document about involving / engaging children and young people has been produced by the NIHR in the UK.
• This Wellcome Trust study explores the role, benefits and potential of young people’s involvement / engagement in health research, providing recommendations on how to meaningfully involve young people in research, and what it means to do that well.

Involving under-served groups – relevant PPI resources

• The NIHR have produced guidance on Being inclusive in public involvement in health and care research

Reporting PPI in your COS study – relevant PPI resources

• Reporting Guidelines – GRIPP2 provides researchers with reporting guidelines for describing PPI/E in their research.
• Two examples of COS studies that have used the GRIPP2 checklist are:  Crudgington et al, 2018 and Smith et al, 2018.