Principal Research Fellow, Centre for Trials Research, Cardiff University | Exploring inclusivity in trials, including research involving adults with impaired capacity to consent | PI of CONSULT https://www.capacityconsentresearch.com #InclusiveResearch
Dr Victoria Shepherd
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Many thanks to all who supported CONSULT, incl @kerryhood.bsky.social @katiegillies.bsky.social @amandafarrin.bsky.social Fiona Wood, Monica Busse, advisory groups, participants. Particular thanks to @researchwales.bsky.social who funded the fellowship, the Faculty, @ctrcardiffuni.bsky.social
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With CONSULT now ending, we are delighted to share two reports that summarise our findings
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CONSULT aimed to support ethical inclusion in research of adults with impaired capacity to consent through series of studies & methodological interventions:
📆5 yrs
📝9 papers (+ 1 in review)
🗝️8 key findings
NEW: 'Making Decisions About Research For Others' - a co-produced information video for families on the role of a consultee/legal representative, why they're being approached & what they would need to consider
🔗https://youtu.be/lerIAU4zq2k
🔗https://www.capacityconsentresearch.com/decision-support
Dr Victoria Shepherd
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4. Consent processes ‘accessible by design’ - OPTIMISE recommendations for inclusive consent
🔗 www.capacityconsentresearch.com/optimise
5. Structured framework for inclusive trial design & conduct - INCLUDE Impaired Capacity to Consent Framework
🔗 www.capacityconsentresearch.com/include-impa...
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2. Research-informed e-learning can help address researchers’ knowledge gap - CONSULT Training
🔗 www.capacityconsentresearch.com/training
3. Practical information & resources can help support researchers - CONSULT website contains collated resources
🔗 www.capacityconsentresearch.com/resources
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New Wellcome-funded project (ACCORD) is now starting & will explore the ethico-legal uncertainties surrounding research involving adults with impaired capacity to consent and develop behaviour-informed interventions to improve inclusion.
🔗 www.cardiff.ac.uk/centre-for-t...
With many thanks to Thinklusive (thinklusive.org) for co-producing the video with the CONSULT Lay Advisory Group
#InclusiveResearch
@ctrcardiffuni.bsky.social @researchwales.bsky.social
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6. Advance research planning could help express future preferences- CONSULT-ADVANCE
🔗 www.capacityconsentresearch.com/advance-rese...
7. Consultees/legal representatives need information & support - co-produced video for families, decision aid SWAT
🔗 www.capacityconsentresearch.com/consult-swat
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8. Methodological development can help build an evidence-base for inclusion - including CONCORD scale to assess the quality of ''proxy consent' decisions
🔗 doi.org/10.1186/s130...
What are the next steps for this research?
Continuing working to embed CONSULT key findings in guidance practice
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What did we find?
CONSULT summary infographic
🔗https://tinyurl.com/2vz28aa3
CONSULT summary report
🔗https://tinyurl.com/bdf9cnka
1. Complex ethical, legal and methodological issues act as a barrier to inclusion - qualitative study with researchers (CONSULT-ENABLE)
🔗 doi.org/10.1186/s130...
