Involving and Engaging People With Learning Disabilities in the <scp>DECODE</scp>* Research Project (*Data‐Driven Machine‐Learning Aided Stratification and Management of Multiple Long‐Term Conditions in Adults With Intellectual Disabilities)

ABSTRACT 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.

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Publication Details

Journal
Journal of Policy and Practice in Intellectual Disabilities
Published
2025-03-01
DOI
https://doi.org/10.1111/jppi.70004
Primary Topic
Mental Health and Patient Involvement
Type
article
Field-Weighted Citation Impact
0.00
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article

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)

Gyuchan Thomas Jun, Heather Neville, Reza Kiani, Satheesh Gangadharan et al.
Journal of Policy and Practice in Intellectual Disabilities
Mental Health and Patient Involvement
article

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)

Gyuchan Thomas Jun, Heather Neville, Reza Kiani, Satheesh Gangadharan, Sarah Rabbitte, Amy Faull, Sonal Kuchadia, Amar Jobanputra
article en

Abstract

ABSTRACT 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.

Journal of Policy and Practice in Intellectual DisabilitiesVol. 22(1)
Loughborough University (GB), Leicestershire Partnership NHS Trust (GB)
Openalex Percentile: Top 93%
Mental Health and Patient Involvement
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