Key Summary
- The ACCORD programme will examine barriers that prevent adults who lack capacity to consent from taking part in clinical research.
- It is led by Dr Victoria Shepherd at the Centre for Trials Research at Cardiff University.
- The aim is to support more practical and inclusive study reports.
Cardiff University has begun a research initiative to ensure that patients who unable to give informed consent are not left out from clinical trials.
The ACCORD programme is being led by the Centre for Trials Research at Cardiff University, and headed by Dr Victoria Shepherd. It is supported by a £2.14m Wellcome Career Development Award and will run for eight years.
The research will examine the legal, ethical and practical barriers that prevent adults who lack capacity to consent from taking part in clinical research.
People living with dementia, severe mental illness, learning disabilities, critical illness or acute medical emergencies, are routinely excluded from research because they are unable to provide informed consent themselves.
However, these are often the very populations most affected by serious health conditions.
The work builds on Dr Shepherd’s earlier CONSULT programme, funded by Welsh Government through Health and Care Research Wales.
Dr Shepherd said: “Many people who lack capacity to consent are excluded from research not because researchers do not want to include them, but because the systems around consent are complex and often difficult to navigate in practice.
“This means we risk building an evidence base that does not represent some of the people most affected by illness or with the most complex care needs. ACCORD aims to understand these challenges in depth and develop practical approaches that help researchers include people in ways that are ethical, lawful and supportive for them and their families.”
