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

Abstract : 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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https://hal.archives-ouvertes.fr/hal-01816653
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Submitted on : Friday, June 15, 2018 - 3:09:07 PM
Last modification on : Wednesday, July 4, 2018 - 9:32:25 AM
Long-term archiving on: : Monday, September 17, 2018 - 11:32:30 AM

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Peter Pennefather, West Suhanic, Fatima Lakha, Deborah Fels. Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain. ELPUB 2018, Jun 2018, Toronto, Canada. ⟨10.4000/proceedings.elpub.2018.15⟩. ⟨hal-01816653⟩

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