title: Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond.
abstract: Internet communication is developing. Social networking sites enable patients to publish and receive communications very easily. Many stakeholders, including patients, are using these media to find new ways to make sense of diseases, to find and discuss treatments, and to give support to patients and their caregivers. We argue for a new definition of patient-reported information (PRI), which differs from the usual patient-reported outcomes (PRO). These new emergent data from the social web have important implications for decision making, at both an individual and a population level. We discuss new emergent technologies that will help aggregate this information and discuss how this will be assessed alongside the use of PROs in randomized controlled trials and how these new emergent data will be one facet of changing the relationship between the various stakeholders in achieving better co-created health.
authors.affiliation: Novartis Horsham Research Centre, Horsham, West Sussex, UK. mike.baldwin@novartis.com
authors.forename: Mike
authors.initials: M
authors.lastname: Baldwin
authors.forename: Andrew
authors.initials: A
authors.lastname: Spong
authors.forename: Lynda
authors.initials: L
authors.lastname: Doward
authors.forename: Ari
authors.initials: A
authors.lastname: Gnanasakthy
mesh_terms: D003142:Communication; D054626:Consumer Health Information / Q000379:methods*; D003657:Decision Making; D004345:Drug Industry / Q000379:methods; D006801:Humans; D020407:Internet; D016032:Randomized Controlled Trials as Topic; D012657:Self-Help Groups