title: From patients to partners: participant-centric initiatives in biomedical research.
abstract: Advances in computing technology and bioinformatics mean that medical research is increasingly characterized by large international consortia of researchers that are reliant on large data sets and biobanks. These trends raise a number of challenges for obtaining consent, protecting participant privacy concerns and maintaining public trust. Participant-centred initiatives (PCIs) use social media technologies to address these immediate concerns, but they also provide the basis for long-term interactive partnerships. Here, we give an overview of this rapidly moving field by providing an analysis of the different PCI approaches, as well as the benefits and challenges of implementing PCIs.
authors.affiliation: HeLEX, Department of Public Health, University of Oxford, Old Road Campus, Headington, Oxford OX3 7LF, UK. jane.kaye@law.ox.ac.uk
authors.forename: Jane
authors.initials: J
authors.lastname: Kaye
authors.forename: Liam
authors.initials: L
authors.lastname: Curren
authors.forename: Nick
authors.initials: N
authors.lastname: Anderson
authors.forename: Kelly
authors.initials: K
authors.lastname: Edwards
authors.forename: Stephanie M
authors.initials: SM
authors.lastname: Fullerton
authors.forename: Nadja
authors.initials: N
authors.lastname: Kanellopoulou
authors.forename: David
authors.initials: D
authors.lastname: Lund
authors.forename: Daniel G
authors.initials: DG
authors.lastname: MacArthur
authors.forename: Deborah
authors.initials: D
authors.lastname: Mascalzoni
authors.forename: James
authors.initials: J
authors.lastname: Shepherd
authors.forename: Patrick L
authors.initials: PL
authors.lastname: Taylor
authors.forename: Sharon F
authors.initials: SF
authors.lastname: Terry
authors.forename: Stefan F
authors.initials: SF
authors.lastname: Winter
mesh_terms: D035843:Biomedical Research / Q000941:ethics*; D019295:Computational Biology / Q000941:ethics; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D018907:Privacy; D061108:Social Media / Q000941:ethics*