Purpose Among health researchers, there is a growing appreciation of the importance of the involvement of service users and members of the public. This recognition has not only resulted in involvement guidelines and improved research ethics but also an increasing use of consensus processes with service users and members of the public to determine research priorities and questions and to agree outcomes to be measured in intervention studies. There is, however, limited advice about how to safely involve survivors of violence and abuse in consensus-based studies.
Methods/results This commentary provides an overview of the adaptations made to a process of core outcome set development, to ensure that survivors of violence and abuse felt safe, heard and supported, and able to contribute in a meaningful way.
Conclusions We advocate for an iterative process of listening to and learning from survivors, as well as buy-in from funders to ensure research studies are appropriately resourced and involve sufficient planning time.
Claire Powell, Eszter Szilassy, Katherine Cowan, Gene Feder, Ruth Gilbert, Emma Howarth, Karen Johns, Ursula Lindenberg, Alison Gregory
Disease Category: Other
Disease Name: Child maltreatment, Domestic violence and abuse
Age Range: Unknown
Sex: Either
Nature of Intervention:
- Clinical experts
- Consumers (patients)
- Researchers
- COS methods research
- Patient perspectives
- Consensus meeting
- Other
This commentary provides an overview of the adaptations made to a process of core outcome set development, to ensure that survivors of violence
and abuse felt safe, heard and supported, and able to contribute in a meaningful way.