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No research about us, without us! Removing research barriers for people with learning disabilities


Published: 22 June 2023

Version: 1.0 June 2023

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Fresh approaches to PPIE (patient and public involvement and engagement) in research are needed to ensure good quality research that is fit for purpose. NIHR Programme Grants for Applied Research (PGfAR) is seeking to increase opportunities for partnerships through our Programme Development Grant Scheme. Below is a case study of one of the successful applications from the first call, which took place in 2022.

Programme Details

Title of programme – No research about us, without us! Removing research barriers for people with learning disabilities
Chief Investigator – Dr Amy Russell
Contracting organisation – East Suffolk and North Essex NHS Foundation Trust
Original Award - £143,161

Why we applied for this funding call

Working individually, we had all seen lots of great innovation in co-design and co-production but we had also seen that there was little evidence on what worked and this resulted in tokenistic or disempowering involvement also happening and labelled co-production. We knew we wanted this project to be different. We wanted to ask the hard questions about whether the research system can be adapted to facilitate true co-production. We wanted to put the process of co-production under the microscope rather than have it as something tagged on to a larger project.

Initially the project application was prompted by a tweet stating the new funding stream was coming. The twitter post was seen by a support worker with health research experience who is part of a group of people, including adults with a learning disability, who produce Easy Read information. In our group we discussed the funding and how it looked different to normal NIHR funding streams, answering a need we had identified. We reached out to some researchers and self-advocates we knew of working in this area.

An Easy Read invitation was then sent across the country to learning disability support organisations and academics involved with learning disability research, as well as to NHS research network contacts. And so the collaborative was shaped. Everyone who was contacted immediately confirmed the need for our research into the barriers facing people with a learning disability to taking part in research and to be equal partners in research leadership.

Benefits to service users and NHS

People with a learning disability face significant health inequalities and often access mainstream NHS services with poorer outcomes. We know that to gain the most benefit from the findings of research your needs have to be represented in that research. To be able to be involved in research it has to be designed with you in mind – and this is why our project looks at co-production because we don’t just want people with a learning disability to do more research as participants; we want them at the decision making table, designing the research to ensure it is inclusive!
This is because some people in our society are being left further behind because they face particular barriers in accessing important public services and are locked out of opportunities. There is increased recognition of the disadvantages that people with learning disabilities face. However, change has been slow and many people with learning disabilities are still ‘cared for’ rather than ‘supported with’. The result is that many people with a learning disability are still excluded and continue to face inequality in every aspect of their lives. (England’s most disadvantaged groups: People with learning disabilities Equality and Human Rights Commission)

Our simple purpose is to bring equality of NHS care closer to adults with a learning disability Our research will enhance NHS personalised care policy ambitions by describing routes to greater health research involvement and participation.

Aims of the programme

This programme aims to produce a new Term of Reference document for inclusive collaborations between researchers and people with learning disabilities. A collaboration of academics, clinicians, self-advocates and learning disability charities will be established to identify and evaluate barriers to inclusion and methods to support the inclusion of people with learning disabilities. We will make practical suggestions for how to work together and how research can be more inclusive through all stages not just when recruiting participants.

Programme design

This programme consists of five work streams (WS) which will establish an inclusive and collaborative model of partnership working. The programme will generate new knowledge about how research can be more inclusive of people with a learning disability.

Work stream 1: Collaborative project design

The team will explore existing evidence and experiential knowledge to agree a terms of reference for the partnership and identify methods to engage and involve under-represented groups in collaborative working. Methods of evaluation will also be assessed, and how non-judgemental and productive evaluation can be facilitated.

Work stream 2: Mapping barriers to inclusion

A number of trials will be identified from the NIHR portfolio that directly or indirectly excluded people with a learning disability, as defined by the INCLUDE definition of an under-served group. Consensus from the partnership members will be sought as to the perceived barriers to inclusion of people with a learning disability. Key points where inclusion could be enhanced will be identified, along with priority areas to address.

Work stream 3: Addressing barriers to inclusion

Working groups will be formed for each priority area determined during WS2, and will work to find solutions to the barriers identified and guidance on how to implement these solutions. The partnership team will explore how accessible information about research can be co-created and shared in ways that meet a range of needs and preferences e.g. easy read versions, films and translations.

Work stream 4: Ensuring research design is inclusive

Using the findings from WS3 and the INCLUDE roadmap a trial identified in WS2 will be redesigned, for example, to ensure public involvement activities are designed to include people with learning disabilities, co-creating participant information and developing more accessible dissemination materials. The redesigned trail will be share with the research as an example of best practice.

Work stream 5: Evaluating the collaboration

The partnership is designed to work collaboratively with inclusion and reciprocity at the heart of its processes. WS5 will focus on evaluating this partnership through methods such as expectation vs reality surveys, diaries of barriers to inclusion and more visual creative methods encouraging members to represent their feelings on the processes.