Earlier this week we brought together a new group of public contributors and members of the research community from a wide range of backgrounds and experience. The group is going to work with us to look at how we can make research happen in ways we agree will be more ‘people-centred’.
And this is an area that you, like us, obviously feel passionate about! We know that we’ll need to work in partnership with members of the public and researchers to get it right, and we had nearly 80 applications to join the group.
We want to say a huge thank you to everyone who took the time to apply. If you missed out, please don’t worry, as this work develops we hope to feed in more thoughts and views as we work together to understand what good people centred research should look like.
What we heard
Dr Matt Westmore, Chief Executive of the Health Research Authority, shared the organisation’s brand-new strategy which puts patients and members of the public who take part in health and social care research right at its heart.
We heard from the group about their hopes and expectations for the project and how we might work best together.
The conversations were rich. Here are some of the common themes emerging from this first introductory meeting.
Improve what and how we communicate
The focus of our project is ‘clinical research’ and we were challenged from the outset to explain this in ways that are more meaningful to those who are not normally involved in research.
By clinical research we mean asking people to take a treatment, use a device or be cared for in a certain way and collecting information about them to find out how well that treatment or care is working.
We will be asking the group what they think about this at our next meeting. Finding language that is understandable and meaningful is a key step to putting people first.
We need to be more inclusive with our language, communicating in more languages, in easy read forms, and using visual and spoken word.
We need to meet people where they are, not expect them to find us. We can’t assume everyone has IT access or is IT literate.
Normalise research and normalise public involvement
We need to make talking together easier to help people trust research so that participation and involvement become the norm.
Feedback and be transparent
We need to tell people when research works, and when it doesn’t. Finding out what doesn’t work is just as important as finding out what does. It is important to feedback all research findings but also how contributors to a project have made a difference to it. One of those attending told us that
Public contributorSo often we get asked to be involved but we don’t know how we have made a difference or nothing actually comes of it.
Use everyone’s skills and experiences
Lived experiences, good and bad, of being involved will help this group establish what can improve the experiences of people with research in the future. There are many skills in the group that can be drawn upon to help.
What’s next?
Our group meetings will be held online for the coming months, but we hope to be able to meet face to face in the not too distant future. We want to make sure that the priorities and needs of people who take part in clinical research, and the people who will be affected by the research, are at the centre of how this project is done. We want to find out and share with researchers what being people-centred really means to everybody, not just people who already know about clinical research.
So there is more to come. Watch this space! We’ll be using our website, social media and HRA Latest to share our progress, and more opportunities to feed in and shape this work.
Public Involvement ManagerBarbara Molonyoates
Senior Improvement Delivery ManagerKate Greenwood