We know how important it is to demonstrate public involvement in your research application and to ensure ongoing engagement as the study progresses, indeed the goal is for all NIHR funded projects to contain meaningful public involvement woven throughout the study life. ‘Nothing about us, without us’ is the rallying cry of good practice, but what does it look like?
Our ‘Capturing the Contribution’ project is an attempt to examine this and the value of the Research Design Service (RDS) having active public contributor teams they can draw upon during the design advice process. We performed a 360° look at what public contributor input looks like and just how valued it is from the perspective of the public contributors themselves, RDS advisers working alongside the public contributors, and the researchers who receive their comments.
When you start a research project you have certain expectations in mind; we knew that public involvement is a funding requirement and that lived experience can be helpful to understand the issues at hand, but the range of value of public contributor input which we saw was a surprise. For us, three comments stood out:
We have come a long way from public contributors solely talking about their lived experiences; they are now ‘critical friends’, commenting on participant burden, patient priorities, diversity, underserved communities, barriers and ethics - to name just a few. They challenge researchers with ‘outside the box’ thinking and are not afraid to highlight inadequacies. The inclusion of public contributors in the work of the RDS has changed our organisation for the better, and researchers can vouch for the improved quality of their applications.
The following short (3.5 minutes) video shows how the ‘Capturing the Contribution’ booklet was developed and provides a quick preview of some of the outcomes.
If our video sparked your interest have a look at our Capturing the Contribution report to learn more about the project and its findings.
All RDS regions have a group of public contributors supporting their Service in various ways - please contact your local RDS to find out more. If you are considering being a public contributor do have a look at our national working together document setting out our core values and behaviours which we hope ensures a working environment where everyone is equally valued.