ACCORD

ACCORD is an 8 year project (2026-2034) funded by Wellcome Trust to explore the complex ethical and legal uncertainties surrounding research involving adults with impaired capacity to consent and develop implementable behaviourally-informed interventions to improve inclusion.

ACCORD project summary

A global ageing population brings rising prevalence of conditions affecting decisional capacity. Yet adults lacking capacity to consent are frequently excluded from research due to the complex ethico-legal issues involved. Consent-based exclusion affects the generalisability of results and leads to inequalities in care. Unless the issues driving exclusionary practices are better understood, research will fail to meet tomorrow’s health and care needs. We must unlock two fundamental questions: 1) which ethico-legal issues limit inclusion and what contextual and intersectional factors affect this, and 2) how are these navigated by those involved in designing, approving, and conducting research? In this project we will address these questions, generating significant shifts in understanding of these issues and developing implementable interventions to improve inclusion: (1) explore how ethical and legal frameworks governing research involving adults lacking capacity are currently interpreted, (2) use the findings to develop new conceptual understandings of the ethico-legal issues, and (3) co-design behaviourally informed interventions in collaboration with public and professional stakeholders to target individual-level and system-wide barriers. This paradigm shift in understanding the barriers to inclusion will enable research to meet future populations’ needs. Engagement with policymakers and focusing on implementation will ensure national and international impact.

For more information about ACCORD, see the Centre for Trials Research website:
https://www.cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/accord

WP 1: Exploring how the ethical and legal frameworks are currently implemented in practice

Are you involved in conducting, reviewing or supporting research that includes (or is relevant to) adults with impaired capacity to consent in the UK?

In the first work package of ACCORD, we are exploring how the ethical and legal frameworks governing research involving adults lacking capacity to consent are being implemented in practice.

We would like to talk to researchers, health and social care practitioners, and members of research governance organisations (e.g REC member or sponsor representative) with experience of these issues. We will then use the findings to develop interventions to address the barriers across individual, organisational and systems levels. We will be conducting online interviews and focus groups. Interviews may take up to 1 hour and focus groups may take approx. 1.5 to 2 hours, and they will be arranged for convenient dates and times.

You can find out more by accessing the Participant Information Sheet for interviews and focus groups.

If you are interested in taking part, please complete the expression of interest form: https://forms.office.com/e/hRX8Ad73M1

If you would like more information or have any questions, please contact [email protected]

ACCORD project team