Public Engagement

ResearchABLE: Creating a network to involve those with learning disabilities in research

Overview

Dr Cathy Randle-Phillips (Lecturer, Department of Psychology) received £1133 to arrange a couple of workshops with local people with learning disabilities, carers, and relevant professionals. The aim of these was to inform the development of a network to share research opportunities for those with learning disabilities.
 

Summary

There is a lot of enthusiasm for people to be involved in inclusive research, but there needs to be education and support provided around this as well as networking and planning prior to any meetings to make sure that people understand what is happening.

Dr Cathy Randle-Phillips

Patient and public involvement (PPI) in research describes a partnership between researchers and patients, their carers, organisations who represent patients, patient support groups or charities. Contributions to the research may come at all stages of the research process. Involving patients or people with personal experience in research is highly valuable as they can provide alternative views from those within research teams. Patients have first-hand knowledge of their condition and may realise different wants and needs than the researchers. In addition, some funders (for example, the National Institute for Health Research) require evidence of PPI in funding applications.

People with developmental disabilities (e.g. learning disabilities and autism spectrum disorders) have not found involvement with research readily accessible. Cathy identified a need and opportunity to improve engagement with this group, with the aim to make the research process inclusive of them. She wanted to source ideas from those with learning disabilities as to how best to make the research process accessible to them.
 

Engaging people with learning disabilities

Cathy held two workshops with interested publics to explore the establishment of an inclusive research network for people with learning disabilities, their carers and relevant professionals. In the first workshop she gave a presentation about why it’s important to involve people with learning disabilities in research and what this could entail. People then took part in small group discussions to talk about how such a network could be set up and what it could do. Feedback was collected at the end of the day to gather the views of the participants about the day and what should happen next. Cathy made sure that the workshops were inclusive and incorporated lots of breaks for discussion and time to gather people’s views and feedback.

Most people at the first workshop were professionals or carers who wanted to assess whether the project was appropriate for those they worked with or supported. More people with learning disabilities attended the second workshop as Cathy visited a number of groups and individuals before the second workshop to introduce herself, the project and its goals in a more relaxed and informal setting, and to discuss ways of encouraging involvement. The start of the second workshop was designed only for people with learning disabilities to go through the presentation again and to have time for discussion. The other attendees from the previous workshop were invited to join afterwards to discuss future plans.
 

Establishment of the ResearchABLE network

There was a lot of interest from local people and organisations about being more involved in research. People saw the benefits of research in its potential to change services and to make a difference to their lives and so suggested research areas important to them or those previously not investigated.

Generally people were positive about setting up a network that would keep in contact via the internet, through emails, a website or a forum and could hold regular events. Group discussion led to some ideas to ensure a network that would continue to grow and to attract new people. The need to properly explain research opportunities to the right people was highlighted, to help people understand what the research was about and whether they would like to be involved.


Fostering the network

This project was extremely beneficial for me. From a personal and professional point of view it has allowed me to reconnect directly with the public that my research is concerned with.

Dr Cathy Randle-Phillips

Following the second workshop, the first newsletter of the network was co-created and circulated. The network has been established as a twelve month trial with a planned conference at the end to bring the group together again and to discuss what has been achieved. Those involved in the workshops expressed positive feedback and were interested in staying involved in the network long term. They recognised that the opinions of people with learning disabilities are often overlooked and wanted their ideas to be listened to, as well as the chance to develop research skills themselves. Several have already become involved in student and staff research projects.

Cathy is looking forward to keeping the network active. She found meeting with local organisations and individuals extremely interesting and valuable. These meetings and contacts will, she thinks, be beneficial to research in terms of both PPI and recruitment. The project has also generated specific ideas for future inclusive research projects that the network is interested in taking forward and funding streams, such as Disability Research on Independent Living and Learning (DRILL), have been identified in order to pursue this.