Having a voice in research
The original Project ASSENT was concerned with how adults with capacity and communication difficulties (CCDs) are included and considered within the ethical and governance frameworks in England and Wales. We investigated current practice in the context of the research provisions of Mental Capacity Act (MCA, 2005).
This involved surveying ethical review processes, talking to researchers, members of Research Ethics Committee members and to people living with CCDs (e.g. people with acquired brain injury; aphasia after stroke; autism; dementia; intellectual disabilities; mental health problems). Our end of project reports are available for download on this website under ‘documents’.
Drawing on our findings, we developed some web-based guidance to provide enhancements to the MCA Code of Practice within the context of existing legislation. The guidance aims to define a way through the complexities of working with adults with CCDs, by recognising personal autonomy in all its gradations, and defining practical strategies and resources that serve to endorse their greater agency. A small-scale review of the web-based guidance triggered a project extension, supported by the Nuffield Foundation.
The aim is to further enhance the relevance and usability of the ASSENT web-based guidance. The primary objective is to produce a refined version of the ASSENT web-based guidance that is responsive to stakeholder views and opinions. This will be achieved by:
- Soliciting and using targeted feedback from our key stakeholder groups on the three domains that make up the guidance: the law and ethics; capacity and decision-making; adaptation and accommodations. This is to promote optimal relevance and usability.
- Establishing collection of authentic case-based scenarios that capture real-life communication processes and exemplify expressions of assent and dissent. Typically, these will be communications taking place between practitioners/researchers/carers and people with CCDs where adaptations and accommodations are invoked to support understanding.
Project user groups
Our advisory group oversees the extension project and our working group, which informs the development of project tools.