Patient and Public Involvement principles and their application in research bids and conduct

When you hear PPI you probably think of annoying phone calls or adverts which (hopefully) have ended now. However, for researchers, PPI is more likely to relate to ‘Patient and Public involvement’. Professor Tracey Williamson recently ran an online session for the Association for Dementia Studies team to consider various aspects of PPI which – as a team with a focus on person-centred care – is an important part of our work. Setting the scene, Tracey clarified that public involvement in research is where the public are actively involved in one or more stages of the research process, for example as members of the research team or study advisers, but not as research participants or subjects.

While PPI is often expected from funders and researchers are encouraged to do it, it can also be beneficial for research as it can provide different perspectives and (hopefully) ensure that research findings have a closer link with what will work in practice. However, it is often expected that researchers automatically know how to ‘do’ user involvement, which we need to recognise is not always the case. While we can be good at sharing experiences of times when it has worked well, there is also a lot of learning that we can take away from times when things haven’t necessarily worked to plan.

How can you find people to get involved?

One of the initial problems people may encounter is actually finding people to be involved in your research from a PPI perspective, but there are a few options to try:

  • Depending on what you’re trying to do, getting the views (with permission obviously) of a couple of relatives, neighbours or patients could be a valid way of testing out some initial ideas.
  • Approach existing groups who may be able to facilitate access to a relevant group of people
  • Work with other contacts who can act as a gatekeeper to the population you’re trying to reach
  • Working with public contributors may be a good way of reaching groups that are harder to reach, e.g. adverts in local newspapers, on the radio, in local businesses etc.

What are some of the opportunities to involve patients or other members of the public in research?

Help to identify and prioritise topics for research – find out what is actually important to people and make sure your research is relevant to them in practice. You could do this at a listening event at an appropriate, accessible venue or online, but make sure that everyone is enabled to contribute in a way that works for them. Plan any such events with your attendees in mind – and find out what will help them – rather than what works best for you.

Research design – ensure you are asking the right questions and using methods that are realistic and appropriate. Users can also help to design paperwork to make it more user-friendly and understandable, or provide advice on the frequency and type of meetings where people would be involved. They can also help researchers to avoid making assumptions or generalisations about their potential participants by providing a different perspective and lived experience. You do need to be clear though in terms of what people can actually have input to, for example the language in validated measures may not be possible to change.

Management of projects – ensure people have sufficient time and opportunity to ask questions and provide feedback during meetings, and also to prepare for them in advance. There’s no point having the right people in the group if you don’t enable them to have an input. Also get their views on the best way to share documents and communicate within a group, which may differ from person to person. While some may be fine with emails, others may prefer paper copies in the post etc.

Undertaking research – people may like to take on a more hands-on approach and get involved in the research itself such as conducting interviews, which may be at a particular point in a study or on a longer-term basis. Find out what people’s previous skills and interests are and discuss the opportunities that are available to see where they can be matched up. Have any responsibilities put in writing.

Analysis and interpretation – people can help to validate any emerging findings or conclusions by providing their own insight, as well as identify any gaps that have not been addressed. They may also be able to provide input to the recommendations and identify areas for further research.

Dissemination – ensure people have the opportunity to get involved in the design and/or delivery of presentations and written outputs, depending of what they are interested in doing. They may have ideas about how and where to share findings, such as informal presentations to a community group, rather than focusing on national conferences.

Implementation – some people may have useful contacts to help reach your target audience. Also, video clips or similar to illustrate the public involvement can help to increase the impact of your work.

What about the use of digital engagement?

Digital approaches to PPI have come to the fore with the pandemic, and can be a quicker, cheaper option that enables you to reach a wider pool as location and travel becomes less of an issue. However, it needs to be driven by a need and what works for the public, rather than because it’s easier for the researcher. Various options can include websites, engagement on social media, surveys, and providing feedback on videos. Other more creative options could also be considered.

What about payments to say thank you?

While we may want to reward people to recognise their involvement, there are a few issues to consider. The type of payment doesn’t necessarily have to be money but could be a testimony, recognition in any outputs, a group meal, a gift token or voucher, or providing them with feedback about the impact of their involvement. However, vouchers can be seen as cash which could affect people’s benefits or tax, and turning down an offer of ‘payment’ could be seen as refusing work. It’s important to find out what the best option is for each individual. It’s important to be familiar with the practices within your own institution as they will change from place to place, and also to have private conversations with people early in a project to ensure everyone knows where they stand.

How can we measure the impact of PPI?

In some cases it can be difficult to justify PPI as it can be considered costly and time-consuming, but some things you can put in place to show the impact could include:

  • Keep a good record of what the involvement has been at each stage of your research and what the outcome was
  • Where possible, capture what would have happened otherwise, e.g. the survey you were planning to use before people provided feedback on it
  • Ask the research team what impact they think it has had
  • Ask the PPI team what impact they think they have had
  • Ask participants what they thought about aspects that were influenced by PPI, e.g. the design of a survey or the set of interview questions
  • Build in an evaluation element for the PPI where you are able within your research
  • If a particular outcome or interesting finding can be directly linked back to a decision or change made as a result of PPI, make sure this is acknowledged. For example, if a question was added because of PPI feedback and that leads to a key recommendation that would have been missed otherwise, that needs to be made clear in any reporting.

 To summarise, here are Tracey’s top ten tips for PPI:

So a huge thanks to Tracey for a great session, it’s certainly clarified some points and raised others for us to take on board in our future work.

Connect with ADS on twitter @DementiaStudies and on Facebook @adsuow

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