Helen Marshall is a Lecturer in Nursing from the School of Health Sciences. Here she tells us about the REACHE project, which aims to promote the inclusion of those with a learning disability within research and increase patient and public involvement.
People with a learning disability have a higher mortality rate than the general public and experience inequality in healthcare and in research. REACHE (Research Engagement And Collaborative Health Enquiry) is a project aimed to promote awareness and increase patient and public involvement from what is an under represented group in research. The project was funded by the Faculty’s Participatory Research scheme.
Ensuring representation
The project started in February 2023 and our ethos throughout was co-production, demonstrating precisely what we aim to encourage – the inclusion of a person with a learning disability as part of the research team. The project was led by myself and Dr Carolyn Lees, a Senior Lecturer in Nursing.
Our team included eight people with lived experience who had a learning disability. Participants were from two Merseyside organisations -‘Moving On With Life and Learning’ (MOWLL) and ‘People First Merseyside’. These organisations promote inclusion, empowerment and giving their members a voice. Also involved were representatives from the School of Health Sciences from Nursing, Orthoptics, Occupational Therapy, Diagnostic Radiography, Therapeutic Radiography and Physiotherapy. Two international summer interns from Canada and America also worked on the project, as well as a recent nursing graduate, who supported the ethical application process.
What we did
We wanted to challenge labels and stereotypes, celebrating people’s skills and talents. Including people’s lived experiences was key. During meetings we shared ideas and discussed what we wanted the end product to look like, where it should be shared and how it should be made. We decided a short, 3 minute video would be the main resource we wanted to create, to highlighting key messages promoting inclusion. Alongside this, we wanted to create shorter clips for social media clips, which would signpost to the longer video.
We worked closely with Liverpool Film Initiative, who were able to bring our vision to life and ensure all views were represented. All parties were involved every step of the way, working collaboratively throughout.
Reasonable adjustments were explored and provided to promote inclusion and overall the interaction and positive approach from the whole group has ensured the success of the project. The REACHE project has been an absolute pleasure to work on as a healthcare researcher. I’ve reflected on my own practices, such as the words I use, and how I plan future projects to ensure I always include patients and the public. Their contribution is essential.
Next steps
We are hosting a focus group with people with a learning disability and healthcare researchers to show them the video as a quality assurance mechanism, to ensure the meaning and the aim of the video is clear. If needed, we will make amendments to the content. We’ll then distribute the video via our professional networks and those of our partner organisations. We’ll also promote it via social media, healthcare conferences and a learning disability led conference.
We plan to host a celebration event for the REACHE team. Feedback suggests those who give their time as a person with lived experience do not always receive updates at the end of projects. For example, did their contribution help in a successful grant application, did the research take place and if so, what did it find. We value the input of all members of the team and the relationships we’ve built and will maintain and want to come together as a team, to acknowledge the closure of this part of the project.
We are also joining with other UK researchers, who are conducting work around greater inclusion of this under represented group in research. We plan to write an article for inclusion in a peer reviewed journal and we will continue to do this in a co-produced way.
Looking towards our next project, our aim is to promote having a person with a learning disability as a member of the research team. We want to lead by example and this will be the next step of putting into practice the message we are delivering.