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Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond
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 an...
Autores principales: | , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Springer International Publishing
2012
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580131/ https://www.ncbi.nlm.nih.gov/pubmed/21766890 http://dx.doi.org/10.2165/11585530-000000000-00000 |
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author | Baldwin, Mike Spong, Andrew Doward, Lynda Gnanasakthy, Ari |
author_facet | Baldwin, Mike Spong, Andrew Doward, Lynda Gnanasakthy, Ari |
author_sort | Baldwin, Mike |
collection | PubMed |
description | 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. |
format | Online Article Text |
id | pubmed-3580131 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2012 |
publisher | Springer International Publishing |
record_format | MEDLINE/PubMed |
spelling | pubmed-35801312013-02-27 Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond Baldwin, Mike Spong, Andrew Doward, Lynda Gnanasakthy, Ari Patient Leading Article 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. Springer International Publishing 2012-08-24 2011-01 /pmc/articles/PMC3580131/ /pubmed/21766890 http://dx.doi.org/10.2165/11585530-000000000-00000 Text en © Adis Data Information BV 2011 |
spellingShingle | Leading Article Baldwin, Mike Spong, Andrew Doward, Lynda Gnanasakthy, Ari Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title | Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title_full | Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title_fullStr | Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title_full_unstemmed | Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title_short | Patient-Reported Outcomes, Patient-Reported Information: From Randomized Controlled Trials to the Social Web and Beyond |
title_sort | patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond |
topic | Leading Article |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3580131/ https://www.ncbi.nlm.nih.gov/pubmed/21766890 http://dx.doi.org/10.2165/11585530-000000000-00000 |
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