Recruiting Participants for Health Research Public Dialogue
The dialogue was designed to gather the views of the public on possible changes to the way individuals are identified and recruited for health research within England and Wales. Currently, few patients are told about clinical trials they are eligible for, a right outlined in the NHS Constitution. The HRA was interested in public perceptions of proposals to make it easier for patients to learn about relevant trials, potentially increasing the number of participants involved in health research.
The process was designed to engage members of the public and patients in order to inform the HRA in the development of a new Research Governance Framework and associated guidance to be published in 2015. These documents will advise research ethics committees and health researchers when identifying and recruiting participants for health research.
What we did
Members of the public and patients were invited to four reconvened workshops held in Liverpool, Nottingham, London, and Cardiff throughout November 2014. Via two evening workshops in each location over 100 participants and experts came together to explore topics ranging from who should have access to patient records, through to the concepts of simplified and zero consent. Presentations, case study examples, videos, and a play helped inform participants of the subject, empowering them to take part in complex discussions with other members of the public and experts.
In addition to the face to face deliberative process, the public dialogue was taken online via a bespoke website developed by the OPM team and a Twitter presence. The website provided the opportunity for members of the public to share their thoughts on a discussion board and via an online survey. While a Twitter account raised the profile of the dialogue, driving traffic towards the website and informing interested stakeholders about the ongoing project.
Our findings have yet to be published, but the outcomes of the dialogue will feed into the development of a new Research Governance Framework and associated guidance as the HRA becomes a non-departmental body in 2015.