What does it really mean to ‘put people first in research?’ Are these just nice, well-meaning words with little content, impact, or even worse sincerity?
In this blog, our Senior Improvement Delivery Manager, Kate Greenwood, explains why we must improve the way clinical research happens in ways that are best for the people taking part and why this is so important for the recovery, resilience and growth of research in the UK. She explains how we hope to do this by working in partnership, seeking out good practice and asking what matters most.
A great strategic priority
People-centred research is a big strategic priority. Lots of organisations are setting out how they will improve the person-centricity of their work. At the HRA we’ve committed to include people in everything that we do. Our vision is for high quality health and social care research today, which improves everyone’s health and wellbeing tomorrow. We’re also an active partner in the government’s Recovery, Resilience and Growth programme, which builds on the successes and the lessons learnt in response to COVID-19, where people-centred clinical research is one of the five key themes for the UK vision for clinical research delivery.
As part of the plan to implement the UK vision, we agreed to lead work on the behaviour change needed to make people-centred clinical research happen more often in the UK.
Great, surely no one would argue that they don’t want to see people at the heart of research and innovation?
Is it me?
I am old enough to admit listening to the late Terry Wogan incredulous on BBC Radio 2 exclaiming ‘is it me?’ about initiatives in the paper he felt were either blindingly obvious or a complete waste of time.
I knew there were already some excellent inclusive research practices that bring new ways of working to help people to take part. But starting out on this work I also had a nagging doubt.
It was unclear to me what being people-centred really meant, and I also knew that the HRA shouldn’t be the only voice to agree a meaning.
I love this picture by Chris Redford created with public contributors and researcher Dr Sarah Knowles. It speaks a thousand words; do we ‘put’ people at the centre of things but still leave them without power or agency?
On the one hand we could be creating paternalism and on the other be virtue signalling. Was this even really the problem we needed to fix right now given the system is so overstretched and were we simply stating the obvious.
Would this be our Terry Wogan moment?
Improving how research happens
Clinical research is vital to making health and care better. It’s important that as many people as possible can take part in projects about their treatment or health condition so that we can help them in the best possible ways, when they need care.
Clinical research in the UK played a huge part in responding to the COVID-19 emergency across the world, but not all conditions are researched so widely.
We know there are lots of people who don’t take part in research and that this is for many different reasons. Some choose not to or drop out because it is too difficult for them to do so. Others are simply not offered the choice. Meaning we often fail to find out what works best for them, or we design our care around people who aren’t really like them at all.
Clinical research is for and about people and yet for many reasons we don’t always find it easy to design and conduct studies that really help, enable, support, or encourage them to take part.
Ask what matters most and work on solutions in partnership
Putting people first and people-centred design isn’t a defined process, it is a way of thinking and acting. You ask what matters most and then you work on solutions in partnership.
Working with a wonderful group of eight public contributors, eight researchers, HRA staff and the University of Lincoln we decided to set out on a journey to do just that; to find out more, to discover what is important and to work out how we can help to improve research.
We have looked at the literature and asked ourselves what matters most to the people who we hope will take part in research and what would research really look like if it was conducted in ways that are best for them. We are also asking a wider group of people through our project.
Six proposed hallmarks – what do you think?
The group has co-created six hallmarks we think research will show if is designed and conducted in people-centred ways and we now want to know what you think.
You can view them on our website and feedback in this survey we’ve created to hear your views and experiences. You don’t need to have ever taken part in research before to answer.
Tell us the good practice and what needs to change
The survey also aims to uncover good practice and to find out what needs to change.
Please tell us what works and where people are doing things well, but also what we can do to make a difference.
As one respondent put it ‘describing good research is easy enough making the change is harder’.
Help others to be heard.
We know a survey is not the best way to hear from everyone and so we are also arranging interviews and sessions to connect with more people. If you can help to facilitate this with individuals from your own communities who are unlikely to complete a survey online, then please get in touch email communications@hra.nhs.uk and write people-centred clinical research in the subject box.
The survey closes on the 17 February 2023, but we will continue to hold one-to-one conversations after this time.
Final reflections
One conversation has identified a key part of all this is to be reflexive and agile and to adapt accordingly. Judging against the hallmarks, we know we haven’t got this right first time and creating materials in people-centred ways is hard. That’s why we will also be reflecting on what is in the way of our own good practice and writing this up as we go.