No research about us, without us! Removing research barriers for people with learning disabilities: Developing Innovative, Inclusive and Diverse Public Partnerships

Susan Buell, Amy Russell (Lead / Corresponding author)

Research output: Contribution to conferencePosterpeer-review

Abstract

Background
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.
A collaboration of academics, clinicians, self-advocates and learning disability charities has been established to identify and evaluate barriers to inclusion and methods to support the inclusion of people with learning disabilities.
Methods
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.
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. Consensus from the partnership members will be sought as to the perceived barriers to inclusion of people with a learning disability.
3: Addressing barriers to inclusion
We will find solutions to the barriers identified and guidance on how to implement these solutions.
Work stream 4: Ensuring research design is inclusive
A trial identified in WS2 will be redesigned as an example of best practice.
5: Evaluating the collaboration
We will evaluate 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.
Findings
We will report on progress so far including outlining our practical and inclusive Terms of Reference and our experiments with different evaluation processes and share our plans for the future for comment.
Conclusions
This project began in June 2023 for 18 months. We are working together and in a process of testing, evaluating and reporting what works at each stage.
Original languageEnglish
Pages1
Number of pages1
Publication statusPublished - 7 Dec 2023
EventThe 20th Seattle Club: Research with people with intellectual and developmental disabilities - Edgbaston Hotel, Birmingham, United Kingdom
Duration: 7 Dec 20238 Dec 2023
http://www.seattleclubconference.org/about_seattle_club.html

Conference

ConferenceThe 20th Seattle Club
Country/TerritoryUnited Kingdom
CityBirmingham
Period7/12/238/12/23
Internet address

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