Letter on “Protection by exclusion? The (lack of) inclusion of adults who lack capacity to consent to research in clinical trials in the UK”

Abstract

Dear editors, We read with interest the recent article regarding the lack of inclusion of people who lack capacity in trials: ‘Protection by exclusion? The (lack of) inclusion of adults who lack capacity to consent in clinical trials in the UK’. As the authors so eloquently spotlight, those without capacity in many population groups are those who are likely to be most vulnerable to frailty, comorbidities and isolation. Their exclusion from research significantly limits the specific evidence base for their care. As a research team developing and evaluating a Dementia Support Worker intervention based in primary care, we appreciate the challenges of including people in complex dementia interventions research who are most likely to benefit from the intervention. We are mindful of one of five ‘Dementia statements’, developed by people living with dementia and grounded in Human Rights law: ‘We have a right to know about and decide if we want to be involved in research that looks at cause, cure and care for dementia and be supported to take part’