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Involving and engaging people with learning disabilities in the DECODE* research project (*Data‐Driven Machine‐Learning Aided Stratification and Management of Multiple Long‐Term Conditions in Adults With Intellectual Disabilities)

journal contribution
posted on 2025-05-06, 11:36 authored by Amy Faull, Sarah Rabbitte, Reza Kiani, Gyuchan Thomas JunGyuchan Thomas Jun, Sonal Kuchadia, Heidi Neville, Amar Jobanputra, Satheesh Gangadharan

Some groups of people are underserved in research. This means that they do not take part in research as much as they should. People with learning disabilities do not often take part in research. There are lots of reasons for this, such as researchers not knowing how to (1) make research easy to understand for people with learning disabilities, (2) communicate well with them and (3) hold meetings in places that people can access easily. This paper talks about how the DECODE project included people with learning disabilities in Patient and Public Involvement (PPI) groups which meant that they were able to share their ideas as part of the research team. There were four PPI groups in DECODE: two groups for people with learning disabilities and two groups for family members and carers. Members from local learning disability networks joined the groups. Easy Read information leaflets and posters were used to support people to join the project. We were able to make adjustments so that people could keep coming to the groups. Regular meetings were held and taxis could be booked for people. PPI members had training about research and updates from the researchers about how their work was helping the project. PPI were involved from the start of the project's design. They supported us to make Easy Read information leaflets and told us what was difficult to understand. People with learning disabilities are able to take part in research when reasonable adjustments are made and when researchers take time to get to know people individually.

Funding

DECODE: Data-driven machinE-learning aided stratification and management of multiple long-term COnditions in adults with intellectual disabilitiEs

National Institute for Health Research

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History

School

  • Design and Creative Arts

Published in

Journal of Policy and Practice in Intellectual Disabilities

Volume

22

Issue

1

Publisher

Wiley

Version

  • AM (Accepted Manuscript)

Rights holder

© International Association for the Scientific Study of Intellectual and Developmental Disabilities and Wiley Periodicals LLC.

Publisher statement

This is an Accepted Manuscript of an article published by Taylor & Francis in Journal of Policy and Practice in Intellectual Disabilities on 08/03/2025, available at: https://doi.org/10.1111/jppi.70004

Acceptance date

2025-02-11

Publication date

2025-03-08

Copyright date

2025

ISSN

1741-1122

eISSN

1741-1130

Language

  • en

Depositor

Prof Thomas Jun. Deposit date: 3 April 2025

Article number

e70004