We have developed a strategy for how the HRA will involve patients and the public in our work and how we will use our influence to increase the amount and quality of public involvement in health research more widely. We published our initial strategy in October 2013 and invited feedback on it to the end of December 2013.
Thank you to everyone who contributed comments on the strategy or who attended the two workshops we ran in November 2013. We have used the feedback to develop an action plan to take the strategy forward in 2014 and 2015.
The aims of the HRA’s Public Involvement Strategy are to:
- Improve the quality of decision making in the HRA by involving patients and the public in our own work, and
- Improve the quality of research the HRA approves by using its influence to ensure that more health research involves patients and the public
We believe that involving patients and the public in health research will improve it by ensuring it is relevant to the needs of patients and more likely to have an impact on their health and wellbeing.
Public involvement means that work is undertaken ‘with’ or ‘by’ patients and the public rather than ‘to’, ‘about’ or ‘for’ them.
This allows you to have a say in decisions about the way health research is planned, designed, delivered, developed, evaluated, managed and regulated. It also means patients and the public are actively involved in the conduct of research studies.
By public involvement, we do not mean participation, where people are recruited to and take part in research studies as the subjects of the research, and contribute the information or data used to answer the question being addressed.
HRA and INVOLVE report: Public involvement in research applications to the National Research Ethics Service (NRES): Comparative analysis of 2010 and 2012 data
All applications to the HRA’s research ethics service ask researchers about public involvement in the study. This jointly commissioned report, offers the first comparative analysis of responses to the public involvement questions detailed in the application form completed by researchers seeking ethical approval by a Research Ethics Committee.
The study looked at applications made by non-commercial funded Studies (for example, National Institute for Health Research (NIHR), medical research charities and research councils) and studies funded by commercial organisations (pharmaceutical companies) in 2012 and compared them to 2010 applications.
Key findings of the report
- For non-commercially funded studies, in 2012, 40% of researchers reported involving or intending to involve the public in their research – up from 29% in 2010.
- 40% of researchers continued to misunderstand the question on public involvement and instead described plans for engagement or participation
- The remaining 20% said they had no plans for involvement
- For commercial studies, in 2012, 5% reported plans for involvement – up from 2% in 2010.
- 20% incorrectly described engagement or participation activities as involvement– down from 31% in 2010.
- 75% reported that they had no plans for involvement – up from 67% in 2010.
The report forms part of a body of work carried out by the HRA and INVOLVE to further patient and public involvement within health research and makes a series of recommendations. These primarily focus on how Research Ethics Committees (RECs) and funders can help researchers understand what public involvement is, how it benefits health research and how it differs from engagement.
The full report and recommendations can be found here.