A blog by Kate GreenwoodWorking it out in partnership
Last year we set up the People-Centred Clinical Research project steering group. This is a wonderful group of eight public contributors and eight members of the researcher community, the University of Lincoln Impact Literacy Institute and HRA staff.
The group was set up to look at improving the way clinical research happens by putting people first. Or put more simply, 'to identify the barriers and enablers to the behaviour changes needed to make people-centred clinical research happen more often' – well this was the official ask anyway!
We have written before about the challenges we had understanding our task at first. But the group held steady to provide an honest and creative space for us all to work the project out … together!
Each member brought a different perspective, experience, and expertise both personally and in research. Each member has made an important and meaningful impact on our shared work.
PS, Public ContributorThe diversity of this group was strong both in terms of demographics but also varied experiences of research participation (or not), health status etc. It’s partly because of those multiple experiences that we’ve been able to breathe some life into not only what good looks like, but also what good feels like. The feelings aspect has been incredibly important in shaping all this (in my opinion!)
Dr Martin Johnson, Medical Director and InvestigatorWe have the opportunity to make the UK the most inclusive place for anyone to take part in clinical research
Asking what matters most
We reviewed the literature and shared our own thoughts but being people-centred means asking what matters most and working on solutions in partnership.
We asked over 400 people; what matters most about taking part in research? What is a good experience and what is not, and how could we remove the barriers?
Thank you to everyone who either completed our survey or held conversations with us. We will publish a more formal project report soon including the barriers you told us about and our recommendations to the research system. In the meantime you can read a short summary of what we did, our main actions and next steps in the new people-centred clinical research section of this website.
Introducing new principles and hallmarks of good people-centred clinical research
We are really excited to share with you some of the first outputs from this work, with more reports and guidance for researchers in coming weeks.
The principles and hallmarks of good people-centred research combine all the learning from our project, re-created by the group to express both the actions of the research team and how the research participant might expect to feel taking part.
Amin Islam, Public ContributorEmbracing diversity and valuing the voice of every individual in the research process is not just a goal; it's a necessity. These hallmarks are a testament to our collective commitment to humanising clinical trials and reshaping the future of research. Together, we're not just defining what 'good' looks like, but what 'good' feels like. The heart of our work lies in the unique experiences and perspectives of each person, and that's where true progress begins.
We hope you will find them useful
We hope you like the hallmarks and that they mean something to you. You can download them and use them now. We have suggested a few ideas how you might do this, and so please email us if you develop them into tools or if there are ways you think we could help. We are developing easy-read hallmarks and templates to be used for translated versions next.
We hope sponsors, researchers and public contributors will use the hallmarks to shape their research and to monitor the experiences of participants as they go. We certainly didn’t get everything right when looking back on our project, and this is how we will improve.
We also hope that the hallmarks will help members of the public to have a conversation with their research team about what they expect it to be like when they take part. This great idea was borne out of our group, and so please share the hallmarks far and wide.
Sarah Markham, Public ContributorClinical Trials are about people and finding ways to help us all lead healthier happier lives and be the best we can be. By applying the Hallmarks, clinical trials will best support the people who participate in clinical research and thereby ensure that the research is of the highest possible quality.
Trust, purpose, possibility
Now we have a better idea of what good research looks like for the people taking part, we will work with organisations and research teams to help make sure this happens more often.
We know this is the first step on a journey and that we haven’t heard from everyone, but we have set out our stall that research should be people-centred as well as ethical, legally compliant and done with scientific integrity. Our new infographic makes it easy to see in one place what this means.
Chris Ward, Study Support Service Specialist, NIHR Clinical Research Network South LondonFor me this is an important step towards a culture that, rather than disproportionately focussing on harm, cares about beneficence & making things better for everyone
Our findings showed many people would take part in research if they were given the opportunity but that there are three things important to them doing so.
Trust – people trust the research and the researchers
Purpose – people feel the purpose is worthwhile
Possibility – it is possible for them to take part
We hope you will join us in supporting research in people-centred ways to achieve this.
Sarah Williams, Director Of Research and Improvement at Solent NHS Trust, and steering group co-ChairWhat a fantastic way to work – a truly co-designed piece of work from which there was so much learning. It’s particularly important that this was an HRA project, as it sets the scene for expectations of researchers going forward. Can’t wait to see how this changes practice, and hopefully shows that co-production is not only possible but a hugely productive way to work.