Dr Victoria Shepherd

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

Image of the title slide from the Making Decisions for Others video for family members

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

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
/end

7/n
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...

Development of a measure to assess the quality of proxy decisions about research participation on behalf of adults lacking capacity to consent: the Combined Scale for Proxy Informed Consent Decisions ... Background Recruitment of adults lacking the capacity to consent to trials requires the involvement of an alternative ‘proxy’ decision-maker, usually a family member. This can be challenging for famil...

6/n
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

Advance research planning Information about advance research planning to enable people who anticipate incapacity to express their wishes about future research participation.

5/n
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

OPTIMISE Recommendations for designing informed consent processes for research involving adults with impaired communication and/or decision-making.

4/n
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...

training Training for researchers on designing and conducting research involving adults who lack capacity to consent.

3/n
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

Unpacking the ‘black box of horrendousness’: a qualitative exploration of the barriers and facilitators to conducting trials involving adults lacking capacity to consent - Trials Background Trials involving adults who lack capacity to consent encounter a range of ethical and methodological challenges, resulting in these populations frequently being excluded from research. Curr...

2/n
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...

With CONSULT now ending, we are delighted to share two reports that summarise our findings
1/n
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

Many thanks to all those involved, including
@streweek.bsky.social @markjayes.bsky.social @annavolkmer.bsky.social @amymrussell.bsky.social Martina Svobodova Thinklusive Centre for Trials Research

Image of the front cover of the OPTIMISE policy brief titled OPTIMISE: Improving inclusion in clinical trials through ensuring consent is ‘accessible by design’

✨OPTIMISE policy brief: Improving inclusion in clinical trials through ensuring consent is ‘accessible by design’

Highlights how OPTIMISE recommendations can help organisations achieve their mission to reduce inequalities through research inclusion

🔗https://www.capacityconsentresearch.com/optimise

YouTube video by MRC Clinical Trials Unit at UCL What is GDPR?

🔒 What happens to your data after you join a #ClinicalTrial?

We co-produced an animation with young people to explain how GDPR protects your information and ensures it’s handled securely.

@hralatest.bsky.social @pentafoundation.bsky.social

🎥 Watch here: www.youtube.com/watch?v=VlI6...

Image of INCLUDE Impaired Capacity to Consent Framework questions and worksheets

INCLUDE Impaired Capacity to Consent Framework for designing trials including adults with impaired capacity to consent now updated to signpost to:

✅OPTIMISE recommendations for inclusive consent
✅CONSULT Training on ethical & legal frameworks

www.capacityconsentresearch.com/include-impa...

🎉 Exciting milestone, our first review paper is published🎉

🔍 Identified 20 vaccine trials & strategies to improve recruitment of care home residents in future vaccine trials.

🔗 doi.org/10.1093/agei...

#WATCHProject; #VaccineTrials; #CareHomeResidents; #CareHomes; #NursingHomes, #CareHomeResearch

New 39 Essex Chambers website, but same mental capacity resources!

My Chambers have launched a new and zippy version of our website.  But don't worry, all the content that you might need - our Reports, our case-law summaries, and our guidance notes - can all still be found via here. We know…

Job opportunity for Research Associate (Research Ethics and Law) to join a new interdisciplinary Wellcome-funded project Addressing consent-based challenges to improve inclusivity in research (ACCORD) being led by the Centre for Trials Research

✨Join my research team ✨

Exciting opportunity for Research Associate (Research Ethics & Law) to join new Wellcome-funded Addressing consent-based challenges to improve inclusivity in research (ACCORD)

Full-time G6
Fixed term 8 yrs
From 1 March
Closes 10 Feb

krb-sjobs.brassring.com/TGnewUI/Sear...

Thanks for sharing our blog about the OPTIMISE recommendations @bsgcarehomes.bsky.social !

For more info about OPTIMISE: www.capacityconsentresearch.com/optimise

@ctrcardiffuni.bsky.social

Thank you for joining the OPTIMISE webinar @dalilatm.bsky.social and for sharing!

💻 Great to have attended the OPTIMISE-ing Informed Consent webinar on designing more inclusive consent processes in trials 🙋🙋🏻‍♀️

🗣️ Helpful to explore many of the issues we often encounter when reviewing #REC applications involving people who lack capacity. Thank you @vickylshepherd.bsky.social

Many thanks to all those involved, including Martina Svobodova, Julia Wade, Thinklusive @markjayes.bsky.social @amymrussell.bsky.social @streweek.bsky.social @annavolkmer.bsky.social, Lay Advisory Group members and those who contributed to the workshop!

Image of interlocking puzzle pieces in a circle

🚨Just launched: OPTIMISE recommendations to help ensure consent processes in trials are more inclusive of people with communication and/or decision-making needs

⬇️download recommendations
ℹ️links to examples & info
🎦recorded webinar
↔️other resources

🔗https://www.capacityconsentresearch.com/optimise

I’m seeking interview participants for my PhD study about patient safety in non-conveyance. If you had an ambulance out for yourself or someone you care for, I’d love to talk to you. Please see ad for details. Please share @lavendercrew.bsky.social @carsonstevens.bsky.social

OPTIMISE-ing informed consent - DEMENTIA RESEARCHER OPTIMISE launch webinar on inclusive consent in trials. Hear the recommendations and join an expert Q&A. 1 December 2025, 2 to 3pm. Register now.

Join the OPTIMISE launch webinar on 1 Dec 2025, 2–3pm. Learn how to make informed consent more inclusive for people with communication or decision-making needs.

www.dementiaresearcher.nihr.ac.uk/event/optimi...

📢3 weeks to go

Webinar launching OPTIMISE recommendations for inclusive consent for trials involving people with communication &/or capacity needs

✅why inclusive consent matters
✅introduce OPTIMISE recommendations & resources
✅Q&A experts

📅 1 Dec
🕑 2-3pm
🔗 www.capacityconsentresearch.com/optimise

Are you (in person) in Sydney around then @annavolkmer.bsky.social ? I’ll be there too (2-11th) 😊!

Our very own Director of Infections, Inflammation and Immunity division @ctrcardiffuni.bsky.social - Dr David Gillespie, delivering his Ted style talk at the Health and Care Research Wales conference. #ResearchWales25

Flyer for OPTIMISE launch webinar on 1st December from 2-3pm

📢 Register for OPTIMISE webinar

Introducing OPTIMISE recommendations for designing more inclusive consent processes to ensure trials are accessible for people with communication &/or decision-making needs

📆1st Dec
🕙2-3pm
🔗https://app.onlinesurveys.jisc.ac.uk/s/cardiff/optimise-webinar-registration

Building inclusive practices around mental capacity and consent in palliative care research

Involved in palliative care research? Join our workshop to explore issues around mental capacity & consent in palliative care research & build collaborations

📆 17 October, 10:30–3pm
📍 Royal College of Physicians, London
📩 @drcarolinebarry.bsky.social

healthandcareresearchwales.org/about/events...

Application Development Award for Health & Care Professionals NIHR invites applications for up to 10 Application Development Awards to support early to mid career HCP researchers preparing future funding proposals.

NIHR will commission up to 10 Application Development Awards for early to mid career health and care professionals including nurses, midwives, pharmacists and allied health professions. Apply by 4th February

www.dementiaresearcher.nihr.ac.uk/funding/appl...