Involving the public with health research: in conversation with epidemiologists

Seed funding from Elizabeth Blackwell Institute enabled three researchers to develop their projects by including the ideas and experience of patients and the public. Article by Barney Marsh, originally published here.

Public involvement in the early stages of research – new dialogues and directions

To a greater or lesser extent, scientific research has traditionally taken place in its own microcosm; the scrutiny of the general public, or interested parties, has typically only taken place in its final stages, if at all. However, public involvement – including in the early stages of research – can offer a wealth of benefits to the research, to the institution and to society at large. Many health researchers now use Patient and Public Involvement (PPI) to develop research with members of the public, rather than about or for them.

Amy Campbell, Zoe Reed and Jasmine Khouja are University of Bristol researchers who benefitted from Public Involvement Seed Funding from the Elizabeth Blackwell Institute (EBI). This enabled the researchers to undertake PPI workshops at the early stages of their work – either before a funding bid was submitted or at the beginning of a PhD project, for example.

All three researchers are using secondary data from the Avon Longitudinal Study of Parents and Children (ALSPAC), as well as other data, to generate their results. Each is investigating very different phenomena, yet all three have benefited from the insights that public involvement can provide: feedback on their proposed research questions, and discussions around specific project objectives, as well as specific social/health/wellbeing outcomes in which their audiences were particularly interested.

Three projects

At the initial planning stages of her PhD project, Amy Campbell, of the school of Psychological Science, decided she wanted to run a workshop with members of the public, to help shape her research questions:

“My PhD investigates the ways that genetics can influence parenting behaviours, depression and anxiety. I hosted a workshop and invited people who’d experienced depression or anxiety to attend. I wanted to find out what the participants felt the research priorities should be: I got them to discuss what they thought the causes of depression and anxiety were, within the context of genetics and parenting. And so we had this whole discussion about the epidemiology of mental health issues.

“Loads of ideas and questions came up: ideas around belonging, acceptance, being wanted, personality and trauma – of course, it’s a hugely complex picture. But the one thing that kept cropping up was the feeling of love within the parent-child relationship as a potential factor, or protective factor, so I focused my research questions around that.”

Dr Jasmine Khouja is a Senior Research Associate in Population Health Sciences at the Bristol Medical School. Part of her project involves investigating the causal relationships between vaping and smoking, and the genetic factors that can influence this relationship.

“I decided to conduct a PPI workshop before submitting my grant proposal, because I was interested in hearing from the people I was studying”, explained Dr Khouja. “Understanding what’s happening in the real world gives context to the numbers and statistics.

“Granted, doing PPI in this field isn’t as easy as something like an experimental study where you get people into a lab and test them, or use a questionnaire – for our work you’re asking for commentary on the design of a really complex methodology. But communicating that is just a challenge for researchers to figure out – and it can help clarify what you’re trying to do for the grant proposal.

“The group wanted to see more about mental health issues, which I hadn’t initially factored in. So I got to add in some more psychology – which is my background – to make it more relevant to their interests.”

Dr Zoe Reed is a Senior Research Associate at the School of Psychological Science. Her study aims to uncover how autistic traits (such as social communication difficulties) change over time and how these changes impact social, health and wellbeing outcomes.

“To achieve this, we can identify genetic variants for these changes, and use these to understand the relationship between changes in autistic traits over time and outcomes of interest”, said Dr Reed. “Involving PPI at this early stage is important; it makes the research more relevant and ensures it’s validity to those it potentially impacts – which means doing research that those in the targeted community think is important and can actually make a difference to them.

“In many ways, trying to identify genetic variants associated with autism can be seen as controversial in autism research. However, in epidemiology research we can use genetics as a tool to better understand causal relationships such as how changes in autistic traits over time can impact social, health and wellbeing outcomes. It was important for me to make this clear to my PPI group. During the process of writing my grant, I became increasingly aware of the sort of conversations happening around this. I think the PPI workshop also helped refocus my aims and helped me stress that outcomes – such as well-being, social and health outcomes – are the things we’re really looking for – things that the PPI group identified as important as well.”

Early-stage PPI – problems and solutions

Using PPI to help determine research questions, or to inform the direction of questioning, hasn’t always been common, for a variety of reasons – although this is changing. More and more, funding bodies are looking favourably on PPI in the early stages of research work: before application stage, written into grants, or undertaken as the initial phase of a project.

“The main problem of early-stage PPI is funding,” said Dr Khouja. “When you’re at the initial stages, funding is important – when you set up a workshop group, you need to be able to reimburse people for their time and organise facilities and so on – and funding is hard to come by. Seed funding opportunities, such as the EBI fund, can be invaluable in these instances. I’ve just received feedback from my grant proposal, and they were very positive about the PPI we’d already done.”

“I think that researchers within epidemiology can find it hard to see the role of PPI,” said Ms Campbell. “I think they also have concerns about how to explain sometimes very complicated methodologies to people. But for my work it was incredibly useful – there are so many gaps in the literature that it would have been quite difficult for me to narrow my focus down into something with real world relevance.

“And just from an ethical perspective, I think that early-stage PPI should be encouraged. Even if at the initial stages it’s harder to visualise the benefits, as the research is ongoing it almost provides a target to focus on. I think that it should be seen as necessary.”

Dr Reed agreed. “It is important,” she said. “It makes the research more relevant and ensures it’s important to those it potentially impacts. It’s always good to get ideas from the audience we are doing research for; understanding what’s happening in the real world gives more context to our findings.

“Even at the planning stage of a project, having those small pots of funding like the EBI Seed Fund available is invaluable. It lets researchers feel secure in asking people what they think, and reimbursing them for their time, before writing the grant.”

Slowly, then, the culture within the research establishment is changing. Altering established protocols in different, complex methodologies has a certain amount of inertia, perhaps, but increasingly researchers are incorporating public voices into their work, alongside an enhanced appreciation of the role that research can play within the wider community – as well as an understanding of the reciprocal role that the wider community can play in research.

“In epidemiology, PPI is definitely going to happen more,” said Dr Reed. “Maybe because the data is already there, researchers perhaps don’t prioritise PPI. But it’s definitely something that people are becoming more aware of.”

Recruitment – casting the net

When recruiting people for their PPI workshops, all three researchers tried to find a diverse group of individuals to get involved with their projects:

“The Bristol Biomedical Research Centre has a public engagement mailing list, which I used”, said Ms Campbell. “I put it up on Twitter as well, but Twitter didn’t really work for what I needed – so every one of my participants came to me via the mailing list.

“My inclusion criteria were fairly broad – I was looking for people who were parents who’d experienced depression or anxiety raising a child, or the adult child of a parent who had depression or anxiety, or someone that worked with these parents. Everyone that came along to my focus group already had extensive experience of PPI apart from, perhaps, one person.”

Dr Khouja used social media rather than a mailing list: “I used Twitter, Facebook and Reddit. I was looking for the vaping forums. There are specific groups for vaping as well, so I had to try and explain I wasn’t looking to condemn, but I’m just interested in their thoughts! And then I also used the NIHR ‘People In Research’ platform too.

“Some of the people I spoke to hadn’t done PPI before, because of how I recruited, but some had. But the broad spectrum of people I spoke to meant that I was getting a variety of opinions; parents and young people.”

Dr Reed’s approach was different again: “I recruited through a charity partner organisation called Autistica. They have a lot of networking groups, and interested people already involved in PPI. I explained who I was looking for – people who were autistic, and also parents of autistic children. Some of them were both autistic and parents of autistic children, so they had these different perspectives. I think all of the people I spoke to had an autism diagnosis, but a lot of them were later life diagnoses.”

Sharing learning and experience with other researchers

For researchers who are considering using early-stage PPI in their grant proposal, there are numerous factors to consider. Once resources have been collated (“NIHR has some really good sources, as has CRUK – including templates to help you plan,” said Dr Khouja), it’s important to prepare for the workshop itself. How to prepare, of course, varies hugely depending on the cohort attending any potential workshops, and the nature of the research.

Undertaking early-stage PPI can also be used as an opportunity to share experiences with other researchers. Some resources from these projects have been used to support others in their PPI endeavours – for example, Dr Reed has provided a series of information sheets for the Tobacco and Alcohol Research Group which have also been distributed more widely, and Ms Campbell has shared her work with her group, and presented to the University of Bristol Psychology PGR Conference.

Increasingly, funding bodies are looking to improve the conversation between researchers and society at large, not only to remove some of the stigma that research can foster within communities – sequestered as it can seem behind its ivory tower – but also to enrich and give meaning to the research that is done. One of the key ways that this can be facilitated is by early-stage PPI, which can give researchers new viewpoints, backgrounds, thoughts and discussions. Not only does it help to formulate research questions that have increased relevance to the real world, but, in dialogue with the community, it can help to generate an understanding of how research is performed, and what it can achieve. It’s a two-way sharing of experiences, skills and learning.

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