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).
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| Title: | 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). |
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| Authors: | Faull, Amy1 amy.wilkins9@nhs.net, Rabbitte, Sarah1, Kiani, Reza1, Jun, Gyuchan Thomas2, Kuchadia, Sonal3, Neville, Heidi3, Jobanputra, Amar3, Gangadharan, Satheesh1 |
| Source: | Journal of Policy & Practice in Intellectual Disabilities. Mar2025, Vol. 22 Issue 1, p1-12. 12p. |
| Subject Terms: | *Health services accessibility, *Meetings, *Families, *Participant-researcher relationships, *Information resources, *Chronic diseases, *Intellectual disabilities, *Caregivers, *Machine learning, *Algorithms, *Adults, Pamphlets, Individualized medicine, Comorbidity, Patient participation |
| 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. [ABSTRACT FROM AUTHOR] |
| Copyright of Journal of Policy & Practice in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.) | |
| Database: | Education Research Complete |
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| 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. [ABSTRACT FROM AUTHOR] |
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| ISSN: | 17411122 |
| DOI: | 10.1111/jppi.70004 |
