Genet Med. 2025 Jan 29:101371. doi: 10.1016/j.gim.2025.101371. Online ahead of print.
ABSTRACT
PURPOSE: People with intellectual disability inequitably access high-quality genetic healthcare. Yet, they are keen to understand more about genetic healthcare and recommend clinicians need education on delivering more inclusive care and that multi-modal genetic health literacy resources should be co-produced.
METHODS: Our inclusive research team applied best practice co-production principles to deliver a suite of resources, the GeneEQUAL Toolkit. Mixed-methods evaluation including surveys and a focus group/interviews assessed (i) clinicians’ perceived capabilities, motivation, and opportunities for providing inclusive healthcare for people with intellectual disability before and after exploring the Toolkit; (ii) the perceptions and opinions of people with intellectual disability about the Toolkit; (iii) the reach of the Toolkit components; and (iv) the reflections of people with intellectual disability and clinicians on the co-production process.
RESULTS: The Toolkit met the expectations and preferences of people with intellectual disability and clinicians and had global reach. Co-production was feasible and judged critical for the high value of the Toolkit, in motivating clinicians to change their clinical practice and empowering people with intellectual disability.
CONCLUSION: Co-production can be successfully applied to improve the engagement of people with intellectual disability and potentially reduce health inequity and improve safety and quality of genetic healthcare.
PMID:39893564 | DOI:10.1016/j.gim.2025.101371
