Members of the public and patients repeatedly indicate their willingness to take part in research, but UK research governance involves complex rules about gaining consent. ReachWest, the CLAHRC West project to create a research register for the West of England to simplify connecting the public and patients with research opportunities that are relevant to them, will launch online soon.
Our research paper called ‘Research participation registers can increase opportunities for patients and the public to participate in health services research’ was published in the Journal of Health Services Research and Policy on 13 January. The paper explores the benefits and issues associated with the research participation register approach.
Research participation registers that seek consent from participants to be approached about future studies have several potential benefits, including:
- increased research participation across clinical and healthy populations
- simplified recruitment to health care research
- support for people’s autonomy in decision making
- improved efficiency and generalizability of research
These potential benefits have to be balanced against ethical and governance considerations. With appropriate processes in place, seeking prospective consent from patients and members of the public to be approached about future studies could potentially increase public participation in health research without compromising informed consent and other ethical principles.