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Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto

Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, ope...

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Detalles Bibliográficos
Autores principales: deBronkart, Dave, Eysenbach, Gunther
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6898892/
https://www.ncbi.nlm.nih.gov/pubmed/31755873
http://dx.doi.org/10.2196/17045
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author deBronkart, Dave
Eysenbach, Gunther
author_facet deBronkart, Dave
Eysenbach, Gunther
author_sort deBronkart, Dave
collection PubMed
description Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century—with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women’s rights movement, with the title of Dave’s keynote “Gimme my damn data” becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients’ rights to access their data and their right to save their lives.
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spelling pubmed-68988922019-12-23 Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto deBronkart, Dave Eysenbach, Gunther J Med Internet Res Discussion Paper Ten years ago, in 2009, “e-Patient Dave” deBronkart delivered an influential keynote speech at the Medicine 2.0 conference in Toronto, organized by the Journal of Medical Internet Research’s (JMIR’s) editor-in-chief Gunther Eysenbach, who themed the conference around the topics of participation, openness, collaboration, apomediation, and social networking to improve health care for the 21st century—with patient participation being a major component. Many see this as a defining event within the participatory medicine movement, perhaps the beginning of a social movement, similar to the women’s rights movement, with the title of Dave’s keynote “Gimme my damn data” becoming a rallying cry and hashtag for patients demanding more access to their electronic health records. On the occasion of the 20th anniversary of JMIR (and 10 years after the keynote), we are celebrating the impact of the keynote for the participatory medicine movement and #gimmemydamndata (also #GMDD) by publishing the transcript of these initial conversations as a manifesto of patients’ rights to access their data and their right to save their lives. JMIR Publications 2019-11-22 /pmc/articles/PMC6898892/ /pubmed/31755873 http://dx.doi.org/10.2196/17045 Text en ©Dave deBronkart, Gunther Eysenbach. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 22.11.2019. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Discussion Paper
deBronkart, Dave
Eysenbach, Gunther
Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title_full Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title_fullStr Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title_full_unstemmed Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title_short Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto
title_sort gimme my damn data (and let patients help!): the #gimmemydamndata manifesto
topic Discussion Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6898892/
https://www.ncbi.nlm.nih.gov/pubmed/31755873
http://dx.doi.org/10.2196/17045
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