Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain

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Date

22 juin 2018

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HAL-SHS : sciences de l'information, de la communication et des bibliothèques

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Ce document est lié à :
info:eu-repo/semantics/altIdentifier/doi/10.4000/proceedings.elpub.2018.15

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Centre pour la communication scientifique directe

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http://creativecommons.org/licenses/by/ , info:eu-repo/semantics/OpenAccess

Mots-clés En

private health data distributed ledgers health data publication

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Peter Pennefather et al., « Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain », HAL-SHS : sciences de l'information, de la communication et des bibliothèques, ID : 10.4000/proceedings.elpub.2018.15

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Résumé En

An inclusive systemic design is specified for publishing data derived from personal private health records, owned and curated by patients. The design is specified with an example of a digital scrapbook of private personal records of care for medically significant pain. This scrapbook is designed to aggregate private records of patient pain experiences and of the care and accommodations they access. The design also specifies how to store, access and analyze those private records through distributed ledgers and how qualitative and quantitative data derived from that private data can be published as a common pool resource with polycentric governance.

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