In this blog, Dr Felicity Shenton, Public Involvement and Engagement Manager, ARC North East and North Cumbria, discusses the development of new ethical guidance to support public involvement and community engagement when carrying out research that deals with challenging or sensitive subjects.
In September 2024, the ARC North East and North Cumbria published guidance for researchers and public contributors, aimed at supporting Public Involvement and Community Engagement (PICE) activities carried out within research that dealt with challenging and sensitive subjects such as childhood trauma, domestic abuse, and serious mental illness.
The guidance can help research teams think through some of the issues that need to be considered including:
- Safeguarding
- Agreeing boundaries
- Access inclusion and equity
- Communication
- Developing sustainable reciprocal relationships
- Managing conflict
- Valuing public contributors
You can access the guidelines, here.
The guidelines are intended to support researchers, public contributors, practitioners and anyone interested in health and care research to work towards ethically sound research practice specifically for the PICE element of the work.
They do not replace the need for formal ethical approval for a research study, for example through NHS or University ethics processes, and are intended for use by people working in or contributing to health and social care research including public contributors, VCSE organisations as well as researchers.
The guidance includes links to other free tools and resources and includes a useful checklist for research teams.
Patient and public involvement and engagement: Do we need an ‘ethical anchor’?
Alongside these guidelines, a group of researchers, PICE leads and public contributors from the North East and North Cumbria have co-authored a paper (published in BMC) exploring some of these issues, and making recommendations around developing ethical standards.
Within the paper, the authors call for ethics guidance to be included in the UK Standards for Public Involvement and discuss this in the context of: emotional risk, physical risk, confidentiality and personal data, support versus paternalism, marginalisation and building and maintaining healthy relationships.
A really useful table within the paper outlines the ethical considerations that might need to be addressed as part of the PICE element of research – which you can view here.
It is generally accepted now that PICE is key to achieving more meaningful and effective research results.
While the UK Standards for Public Involvement offer valuable direction for PICE activities, they currently lack specific guidance on ethical conduct.
These new Ethical Guidelines and the arguments laid out in the published article are intended to promote further discussion and help to support good practice.
If you have any questions about this work, please get in touch: felicity.shenton@cntw.nhs.uk