Championing research studies in Whitleigh, Plymouth
We have been working with communities to try and improve the number of people who know about and who get involved in health and care research, as well as broaden the range of backgrounds and communities that research participants come from.
In September 2022 we recruited 6 Community Champions from Whitleigh in Plymouth to our first ‘Research Ready Communities’ project.
Whitleigh is a lot like lots of communities on the edge of large towns; although it is only 6 miles from the centre of Plymouth, it has ‘urban isolation’ due to the cost of and infrequency of public transport. It is amongst the top 5 of Plymouth’s ‘most deprived’ communities in terms of socio-economic status amongst other measures, but has a number of very vibrant community organisations and active residents, and so we invited the Whitleigh residents to join us in working together on a new project.
Community Champions are local people who are passionate about ensuring that everyone in the local area has their voice heard and has the chance to take part in health and care research studies. The 6 Community Champions who make up the team on this project come from different parts of Whitleigh, have a range of backgrounds, experiences and perspectives, and together, they are helping us to find ways to bring research to communities more effectively.
So far, these Community Champions have taken part in two days of national training, have worked together to map the Whitleigh area to look at existing assets and areas of existing positive connection, and have also recorded places, spaces and groups who are still left out, are on the edges or who are not heard from often enough.
They have talked to just over 100 other Whitleigh residents and have interviewed them to find out what people already know or think about health and social care research, and they are using this information to design events, materials and actions with the aim of making research and studies more accessible to all.
The Community Champions are at the stage of feeding back to the wider Whitleigh community about what they have learnt, as well as planning to hold an event to give much more information to all about what kinds of studies are looking for participants; these range from simply answering a one-off questionnaire, to keeping a series of journals or diary entries about a particular aspect of health or life, or could mean giving a saliva sample, for example.
Lots of these studies can be completed online or at home, and the public can also take part in many studies around specific health conditions – or with no condition at all as a healthy volunteer. This is the kind of information that the Community Champions have identified as being needed more widely if we are to make health and care research studies accessible to all. The Community Champions are also considering whether leaders from the local health and social care services, GP practices and pharmacists need to hear some of the findings of their community research - they have already met with University Hospitals Plymouth NHS Trust’s Mobile Research Unit team and shared information which will help ensure community engagement is as helpful and wide-reaching as possible in the area.
Another interesting aspect of the feedback from the Whitleigh community is around motivation. There are many reasons why people volunteer to take part in research studies; some people want to help future generations, whilst others want to help find better solutions for their own health. Many say that the extra check ups and contact with the study team is reassuring and helps them to feel in better control of their own health and life. The majority also say it helps with self-esteem and a feeling of purpose, and many experience a combination of all of these and more. The feedback from Whitleigh has also shown, though, that researchers and study staff have to understand that the benefits of participating in a particular study have to be really clear to potential participants; there are so many competing priorities in the shape of the cost of living crisis and more general demands on the health and care systems at the moment, that the public need to feel confident that their participation is going to be truly beneficial to themselves, as well as to others. So, this is another really crucial finding that has come from the project so far which will be fed back to research teams and the wider research network to help improve wider engagement from a greater proportion of communities.
Researchers need participants to join their studies – it’s a vital way to ensure that we keep improving health and social care systems, policies and services, as well as treatments so that everyone has the happiest and healthiest lives possible. We hope the work in Whitleigh will encourage more of the community to take part in research studies, and that what we are learning from the community will help us to feed information into other parts of the system to ensure that the right types of research question, about the issues that matter most to communities, are prioritised.
The ‘Research Ready Communities’ programme, and the Community Champions model will be extended to other areas in the South West Peninsula in 2023/24, so keep your eyes open for more information and news from the Community Champions in Whitleigh in the future. If you are interested in potentially becoming a Community Champion, or want your community to be considered as a future ‘Research Ready Community’, please contact Elly French, Patient and Public Involvement and Engagement Officer for the NIHR Clinical Research Network in the South West Peninsula at elly.french@nhs.net or by calling her on 07780 229644.
You can also find out more information about health and social care research and available studies near you at https://bepartofresearch.nihr.ac.uk/
The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR or the Department of Health and Social Care.
