Bringing together experts in public involvement, researchers, public partners, and the public to improve early-stage research projects

Kabelo, as an expert on Patient and Public Involvement and Engagement how would you describe PPIE and the importance of its role in research? 

“Patient and Public Involvement and Engagement” (PPIE) is, perhaps, an overly complicated term for a straightforward concept. The National Institute for Health Research defines PPIE as “…conducting research ‘with’ and not research ‘on’ patients and members of the public.” The term itself is a perfect example of how research and the Academy (the broader academic world) create structures that are inaccessible to those who are often the ‘main characters’ in a piece of research. The aim of PPIE is to engage and include patients and members of the public to create and own knowledge, but the term doesn’t encompass its core values of inclusion, the rebalancing of power, accessibility and representation.

At its core, PPIE is a tool through which we bring those who have lived experience to the centre of  the research we conduct to understand that lived experience. Effectively, PPIE is providing a platform for ‘the main characters’ to write their own lines, about their own lives, in the way that they want. PPIE focuses on letting those who live a story, tell that story. In doing this, we create space for this story to be told with greater empathy, understanding and perspective while also encouraging rigour and accuracy – key aspects to quality research.

What were each of your roles at the People’s Research Cafe?

Kabelo: At the People’s Research Café I would approach members of the public and begin engaging with them about Cafe, PPIE and why these approaches were important (both to the researcher and the public). This would lead into discussions on what the researchers were aiming to do, the research projects that were available as well as what personal interests the members of the public had. This initial engagement enabled me to best pair up the members of the public with a research team and I would then invite them into the People’s Research Cafe and introduce them to the team. This demonstrates a snapshot of how PPIE interacts on a small scale while still having significant engagement and lasting impact. Through the People’s Research Cafe we were able to bring members of the public into the research and thus partially bridging the gap between researchers and patients.

Kim: I brought a research project to the People’s Research Café for discussion with public visitors.

Barrie: As a lay person, with no background in any kind of science, I was very pleased to join in the Research Café and to support the researchers as they involved members of the general public in their projects. I saw myself as a link between the researchers and those who dropped in for a coffee and a chance to discuss research projects at first hand. I introduced the researchers by name and invited them to explain to the visitors (a) what their project was aiming to do and (b) how the visitors could give practical help. My aim was to keep the conversation going and also to keep it “on track”, as some visitors had specific general questions which didn’t actually relate to the projects under discussion. I also encouraged the visitors to comment on specific issues raised by the researchers and, where appropriate, to list the issues in order of importance.

Kim, what research project did you bring to the People’s Research Café and what is it about?

I brought my project examining the impact of covid-19 pandemic lockdowns on children’s respiratory (throat, lung and airway) infections to the People’s Research Café. The pandemic lockdowns, although intended to reduce the spread of covid-19 infections, also reduced the spreading of other viruses that cause respiratory infections. We are planning to use electronic health care records from GP practices in England to look at the impact of covid-19 pandemic lockdowns on children’s respiratory infections and I was very interested in hearing about children’s experiences during lockdown from parents/carers. Previous reports showed that children’s respiratory infections greatly decreased during lockdown, and we predicted that this may impact on their future health, but there were many different research questions we were considering exploring. I wanted to hear from parents/carers and other members of the public about what mattered most to them in relation to my proposed plans and to gather their views on the importance of my research questions.

What questions did you ask visitors to the People’s Research Café about your project?

First, I asked about the visitor’s (or their children’s) experiences with respiratory infections during lockdown and whether this changed as restrictions decreased. Then, I asked about what they were most interested in learning from our research project by presenting four possible areas and asking them to discuss and vote for the one they were most interested in:

1. Whether the types of throat, lung and airway infections children got in 2020/2021 has changed from previous years?

2. Whether the infections children got in 2020/2021 were more serious than they were before?

3. Whether the number and types of throat, lung and airway infections children got was different for babies born in March 2020, but then things returned to “normal” in their second year of life?

4. Following these children to see what happens with their health as they get older?

Finally, I asked for their views on the importance of this research topic.

What did visitors tell you?

Visitors told me of their experiences during lockdown. Those who had their own children felt that the information we provided in the introduction to our project reflected their experiences; that children did not get respiratory infections during lockdowns, but this changed when lockdown eased (especially when children returned to school/nurseries).

We discussed what they were most interested in learning from this research project by reviewing the 4 possible research areas:

1. Whether the types of throat, lung and airway infections children got in 2020/2021 has changed from previous years?

2. Whether the infections children got in 2020/2021 were more serious than they were before?

The visitors were generally not interested in learning about whether the usual types of respiratory infections in early childhood had changed before/after pandemic lockdowns, but many expressed interest in knowing whether the severity of infections had changed.

3. Whether the number and types of throat, lung and airway infections children got was different for babies born in March 2020, but then things returned to “normal” in their second year of life?

Some visitors were also very interested in learning about whether children born during the pandemic lockdowns who may have missed out on some of the typical respiratory infections would “catch up” on these later. However, some of the visitors felt this was not a topic of interest as it was clear to them this is what occurred with their children or children they knew – they felt things had returned to “normal” in terms of patterns for respiratory infections in early childhood so they didn’t feel that this was something of importance to study.

4. Following these children to see what happens with their health as they get older?

Most visitors felt this was a very important area to study. Parents/carers and other visitors expressed concern about whether the pandemic lockdowns and possible changes in the frequency and timing of respiratory illnesses may affect children’s future health.

The discussions at the People’s Research Café confirmed for me the importance of this research question, and also confirmed the critical importance of explaining to the public, “why does this matter?” In answering the third question, many visitors discussed how lockdowns due to the covid-19 pandemic are hopefully a thing of the past, so they wanted to know how our research about the impact of covid-19 affect how things are done in future.

Barrie’s contributions to this part of the discussion were extremely helpful in terms of engaging the public visitors and he would ask important questions to help assist in translating my scientific language into more appropriate lay language for the public.

How will what visitors told you impact and/or change your project?

Our discussions around the different possible research questions have allowed me to prioritize what I will explore first in this research project. The public also expressed great interest in following this group of children forward to see the potential impact on their future health, which is something I was already interested in doing, but this helps motivate me to pursue it further as it matters to the public.

The discussions with the public about “why does this matter?” were very useful to me as a researcher. In the initial development of my project I had similar questions about what the expected impact/value of this work might be. The conversations with the public helped to strengthen and clarify my arguments and thinking around this.