In January, we featured Brian and Vandra, a patient and carer who helped Dr Marianne Coleman to carry out meaningful public involvement in her research. Marianne used our new Integrated Research Application System (IRAS) guidance to reflect her public involvement work in her IRAS application form.
This month, we talk to one of the lay Research Ethics Committee (REC) members who sat on the panel that reviewed Marianne’s study. We asked Dr Alison Ledward what difference good public involvement made to Marianne’s research application.
Recommendations from patients and carers play an important part in the ethical review of a study. As a member of a REC I want to feel confident that the researcher will respect and value participants’ views from the outset, and that this will feed into their research.
Dr Marianne Coleman’s attendance at the REC meeting stood out for me, and I recall that she was very enthusiastic and interested in exploring lay committee members’ views.
summary on the IRAS form for Marianne’s study was clearly presented in a
readable format. It is always very helpful to lay members of RECs to be able to
refer to a ‘plain English’ summary that isn’t full of jargon.
Marianne demonstrated very competently her ability to ‘put on the participant’s hat’. I think this is at least partly because of her involvement of patients and their carers who have direct experience of dementia.
The participant information sheet is a key feature of the ethics review process. Marianne’s patient information sheet was very ‘participant-centred’. I distinctly remember that she planned to work with participants in partnership with the healthcare professional – something that is vital to building a trusting relationship and making participants feel secure and cared for.
I think it is virtually certain that the public involvement element of the study was instrumental in achieving a good understanding of dementia patients’ well- being, sensitivity to their needs and respect for their autonomy. This distinctly contributed to building a stronger case for the research. Good public involvement can help to make research more ethical and produce better outcomes.