Assessing public involvement as part of ethical review: A “game-changer” in making public involvement the norm or a bureaucratic step too far?

2014 Conference

Abstract: The role of the Health Research Authority (HRA) is to protect and promote the interests of patients and the public in health research so that they feel safe and confident to participate. It does this through the ethical review of health research and by making the processes by which high quality research is assessed simpler. The HRA believes that involving the public in health research is essential to ensure that it is of high quality and will benefit patients. Researchers who apply for ethical approval are required to say whether and how they have involved the public. However, to date the quality of this information is generally poor and it is not consistently taken into account when deciding whether or not to approve an application.

Following public consultation on its approach to public involvement, the HRA has decided to make public involvement a more formal part of ethical review. To start with it will do this by: developing clear messages to researchers and research funders that it expects patients and the public to be involved in the design and conduct of research on people; improving guidance for applicants and providing examples of what is expected in the application form; and working with ethics committees to ensure a consistent approach across the UK, including designating a public involvement “champion” on every committee. We will describe the progress made in the first six months of this initiative and invite discussion including whether we gone far enough or should perhaps go further, even to the point of making public involvement mandatory.