Pennefather , Peter and Suhanic , West and Lakha , Fatima and Fels , Deborah , - Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain

elpub:4623 - ELectronic PUBlishing, June 20, 2018, Connecting the Knowledge Commons: From Projects to Sustainable Infrastructure
Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain

Authors: Pennefather , Peter and Suhanic , West and Lakha , Fatima and Fels , Deborah ,

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.


Source : oai:HAL:hal-01816653v1
DOI : 10.4000/proceedings.elpub.2018.15
Volume: Connecting the Knowledge Commons: From Projects to Sustainable Infrastructure
Section: Short Papers
Published on: June 20, 2018
Submitted on: June 20, 2018
Keywords: private health data, distributed ledgers, health data publication, [ SHS.INFO ] Humanities and Social Sciences/Library and information sciences


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