Co-producing ethics
Our research team worked together to co-produce our research application which was successfully funded by the ESRC in late 2021. Before starting our research and fieldwork we had address our research ethics: which included writing an ethics application to carry out research in two NHS services (known as IRAS).
In early 2022, the University of Sheffield social science researchers of the Humanising Healthcare team won some Research England Funding to Co-produce Ethics with our advocacy-based organisation research partners (which include experienced researchers with learning disabilities including some who also have autism). We worked together between March and August 2022.
Our Project logo - a healthcare professional with a big heart
GUIDELINES FOR CO-CREATING ETHICS
We co-produced our ethics by working together on four Online Co-production Workshops held on Zoom (though other web conferencing platforms are available). Workshops lasted for two hours and we focused on four themes:
1. Introductions
2. Explaining consent
3. Understanding research
4. Explaining research methods
Our Easy Read Participatory Ethics Good Practice Guidelines document is available to download here:
Our key Guiding Principles for co-producing ethics are:
Pay non-academic partners for their time.
Always start a research meeting with some friendly introductions.
Always use Plain English and Supporting Images.
Always start a research meeting with a reminder of the research.
Remind people that they can leave research projects if they no longer want to be involved.
Spend time explaining Consent.
Always recap on previous sessions and meetings.
Explain the research context.
Spend time together understanding and co-producing research methods
Make sure all information sheets and consent forms are co-produced in accessible ways.
We hope that these guidelines will be used by
People with learning disabilities who work as researchers and also those who become involve in research as participants.
University and clinical health researchers.
Students across medicine, social sciences and humanities.
Funders of research.
Ethics Committees in universities and the NHS.
Accessible information sheets and consent form
In order for researchers with learning disabilities to participate in this project we shared the following accessible information sheet and consent form: