title: Research participation registers can increase opportunities for patients and the public to participate in health services research.
abstract: Members of the public and patients repeatedly indicate their willingness to take part in research, but current United Kingdom research governance involves complex rules about gaining consent. 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; and 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.
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK NIHR CLAHRC West, Bristol, UK verity.leach@bristol.ac.uk.
authors.forename: Verity
authors.initials: V
authors.lastname: Leach
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK NIHR CLAHRC West, Bristol, UK.
authors.forename: Sabi
authors.initials: S
authors.lastname: Redwood
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK.
authors.forename: Gemma
authors.initials: G
authors.lastname: Lasseter
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
authors.forename: Axel
authors.initials: A
authors.lastname: Walther
authors.affiliation: University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
authors.forename: Colette
authors.initials: C
authors.lastname: Reid
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
authors.forename: Jane
authors.initials: J
authors.lastname: Blazeby
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK.
authors.forename: Richard
authors.initials: R
authors.lastname: Martin
authors.affiliation: School of Social & Community Medicine, University of Bristol, Bristol, UK NIHR CLAHRC West, Bristol, UK.
authors.forename: Jenny
authors.initials: J
authors.lastname: Donovan
mesh_terms: D006302:Health Services Research; D006801:Humans; D007258:Informed Consent; D010358:Patient Participation; D018579:Patient Selection; D011446:Prospective Studies; D006113:United Kingdom
keywords: participation; prospective consent; research registers