The NHS constitution outlines the rights of all patients to be informed about research studies they are eligible to take part in. However, healthcare professionals do not always know about all relevant research and do not have time to discuss opportunities with patients.
A public dialogue was commissioned by the Health Research Authority with support from Sciencewise on identifying and recruiting participants for health research. It was designed to engage members of the public and patients in order to inform the HRA in the development of a new policy to replace the existing Research Governance Framework and associated guidance. It explored public and patient attitudes towards access to patient records, different models of consent and simplified consent processes in trials of existing licensed products. This 12-month project took place between August 2014 and July 2015.
The process took place in four locations across the UK – Cardiff, Liverpool, London and Nottingham – with reconvened workshops taking place in each location. A total of 108 patients and members of the public took part in the workshops, alongside 24 experts and nine patient experts. The public dialogue process was run by the Office for Public Management (OPM) Group and was evaluated by 3KG.
The public dialogue has been used to inform a draft replacement of the Research Governance Framework (RGF) and has also been used to inform guidance on simplified consent, recruiting participants for health research, and the role of Research Nurses in accessing patient records.