Caroline Gillett is an Assistant Professor in Patient and Public Involvement and Engagement in the College of Medicine and Health at the University of Birmingham. She collaborates closely with many early career researchers and clinician scientists working in endocrinology.

WHAT IS PUBLIC ENGAGEMENT WITH RESEARCH?

When we say ‘public engagement with research’, we are normally referring to interacting with members of the public to share our knowledge, current ideas or future plans. Listening is a critical part of this, as public engagement is ‘by definition a two-way process ... with the goal of generating mutual benefit’.¹ If we simply talk at people, we may never know if we are being understood or, perhaps even more critically, if we are missing out on alternative explanations or approaches of value.

For example, it often becomes very clear to us how we might improve a presentation that we have delivered, following the questions or suggestions raised by those in attendance. This feedback process highlights to us where we may have been unclear – or even potentially biased in our approach or thinking. We might tweak our presentation for clarity or change how some of the research is conducted in future (e.g. by trialling a new analytical technique that is brought to our attention).

The idea that our audience might have something useful to add only really becomes ‘controversial’ for some people when the attendees that we are talking about are non-academic members of the public. For the most part, the public make helpful comments or ask questions driven by genuine interest and curiosity. This experience can itself be re-invigorating for researchers, who are ‘reminded’ of how what they do stimulates excitement and hope for others. Occasionally, of course, really ‘left-field’ interrogation can leave us all stumped; but this is often thought-provoking in itself!

Certainly, I am not here to advise any researchers to pander to public opinions based on misinformation. In fact, it’s important that scientists do disagree in such instances, and signpost to high quality evidence where possible (The Society for Endocrinology’s strategy highlights the role of endocrinologists in combatting misinformation.) However, in engaging with challenging characters during public debate, we at least learn to come better prepared to tackle similar opinions and situations in future. We may also better familiarise ourselves with the different origins of misinformation too. It strikes me that this is especially relevant within endocrinology, as so many non-experts purport to be experts. Look no further than the countless social media profiles happily monetising supplements or other ‘solutions’ to vulnerable people, who may have really complex health conditions and needs. Understanding these sources and the supposed ‘evidence’ they draw on may help us counter spurious claims more effectively.

WHAT IS PUBLIC INVOLVEMENT IN RESEARCH?

Public involvement in research takes engagement several steps further. Here, we do not only listen, but we also make a commitment to share decision-making, through evaluating and acting on the feedback and ideas we receive. Of course, sometimes we cannot take suggestions forward. However, we position ourselves to clearly explain why and where this might not be possible, because of specific limitations (mandatory regulations, funding restrictions, lack of evidence, skills etc.), making research more transparent and accountable.

Effectively, we are talking about partnering with the public to do research with them. We include patients and/or carers in this definition, and the involvement of these groups is particularly important in the context of biomedical or clinical research. The National Institute for Health and Care Research (NIHR) defines involvement as ‘an active partnership between patients and the public and researchers in the research process, rather than the use of people as “subjects” of research’.²

It should be possible to involve members of the public at every stage of the research cycle, from defining or prioritising the research question itself, to study co-design and data collection, right the way through to data interpretation, dissemination and beyond. Once again, this can seem a ‘radical’ approach, particularly to those on the discovery end of fundamental scientific research. In contrast, many on the clinical end of research tend to already be undertaking such activities to a lesser or greater degree, even if they may not recognise it as ‘patient and public involvement’ (PPI).

In reality, what we are talking about is the public working with researchers to define and challenge what is deemed an acceptable and feasible research approach. That is, they understand the advantages and limitations of the approach and why that approach (as opposed to the others available) is the right one for the given circumstances. It’s therefore not necessarily about training the public up on how to ‘conduct research’ using a highly technical piece of lab equipment – which would obviously take many years of experience and practice to master!

However, in other research fields, some capacity building might not be unreasonable or time-prohibitive, especially as it could add unique insights and value, which outweigh the costs. Take for instance a qualitative research project on the experiences of patients with endocrine cancer. The researchers might involve people with relevant lived experience to support them in co-designing the interview questions and in analysing and interpreting the data collected. This might involve training them to use a software tool to code the data into emerging themes, which will later be cross-referenced across multiple reviewers for consistency. Differences of opinion can then be discussed to reach agreement on the final themes selected for interpretation. We might anticipate, for example, that those with lived experience of endocrine cancer might pick up on (i.e. code) subtle themes within the transcripts that other reviewers might be ‘blind’ to. Their involvement should thus hopefully make the research more representative and relevant, as perspectives have been appropriately widened, and/or consistency across more stakeholders has been further established.

WHY DO ENGAGEMENT AND INVOLVEMENT MATTER?

A lot of research is publicly funded, so it seems only right that we can evidence how this research is addressing societal needs and priorities. Publicly sharing what we do through engagement activities is one means of achieving this, and actively involving the public in the research process is another. As an absolute bare minimum, I believe we can always involve citizens in our research to improve our engagement efforts: for example, through designing public engagement linked to our research together.

Nowadays, most research funders want to see engagement and involvement within projects. Indeed, NIHR and several other major charity funders actually require grant applicants to consider how they will meaningfully embed public involvement into their projects. It is not uncommon for members of the public to be involved in the grant review or interview process. You may also consider involving a public co-applicant to strengthen your proposal by showing how they will contribute to the governance and public accountability of your project over its duration.

Ultimately, though, this is about driving high quality research that is more societally relevant, accessible, representative and impactful. Involvement can help us avoid ‘invisible’ pitfalls which lose us time and resources in the long run. For instance, involvement might highlight barriers to trial compliance, cultural sensitivities that we should be mindful of, or poor recruitment procedures. Meaningful collaboration with the end users of our research is mutually beneficial, as it improves research quality and uptake – and surely we all want this?

PRACTICAL HINTS AND TIPS

Engagement can be so broad, from public talks and workshops, to creative art installations and community festival activities. There are lots of great ideas and case studies for public engagement on the National Co-ordinating Centre for Public Engagement (NCCPE) website.1 Check if your organisation has a public engagement and/or outreach team, as there may be local funding or existing opportunities with which you can get involved. Similarly, many organisations will also have great people supporting PPI and most would be happy to give you advice and tips on setting up a PPI group, costing for involvement and general good practice. You could ask to shadow a PPI meeting, for example. The NIHR² and UK Standards for Public Involvement³ have excellent guidance as well.

My main advice is to always think about your aims and what will make your activity mutually beneficial to you and to those you seek to engage or involve. Evaluating your approach and reflecting on feedback are also really important, to continually build upon best practice.

Don’t underestimate the costs, but please don’t let this put you off either. I’d far rather that researchers gave it a go and learned through making a few honest mistakes than never started at all. This is also an evolving space, so there’s still time to be one of the pioneers in endocrinology!

CAROLINE GILLETT
Assistant Professor in Patient and Public Involvement and Engagement, Institute of Metabolism and Systems Research, College of Medicine and Health, University of Birmingham

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REFERENCES

1. NCCPE 2024 National Co-ordinating Centre for Public Engagement www.publicengagement.ac.uk.
2. NIHR 2021 Briefing Notes for Researchers – Public Involvement in NHS, Health & Social Care Research www.nihr.ac.uk/documents/briefing-notes-for-researchers-public-involvement-in-nhs-health-and-social-care-research/27371.
3. UK Standards for Public Involvement 2019 Better Public Involvement for Better Health & Social Care Research www.invo.org.uk/wp-content/uploads/2019/11/UK-standards-for-public-involvement-v6.pdf.