Episciences.org TEI export of elpub:4623 - ElPub - ELectronic PUBlishing, 2018-06-20, Connecting the Knowledge Commons: From Projects to Sustainable InfrastructureCCSD - EpisciencesAttribution 4.0 International (CC BY 4.0)

Episciences.org API platform

Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for PainPeterPennefatherWestSuhanicFatimaLakhaDeborahFels2018-06-20 22:15:362018-06-20 22:43:05contributorOpenEditionPresspress@openedition.orgCCSDelpub:4623http://elpub.episciences.org/4623elpub:4623 - ElPub - ELectronic PUBlishing, 2018-06-20, Connecting the Knowledge Commons: From Projects to Sustainable InfrastructureAttribution 4.0 International (CC BY 4.0)Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for PainPeterPennefatherWestSuhanicFatimaLakhaDeborahFelshal-01816653ElPub - ELectronic PUBlishingConnecting the Knowledge Commons: From Projects to Sustainable InfrastructureShort Papers2018-06-20T22:43:05+02:0010.4000/proceedings.elpub.2018.15Englishprivate health datadistributed ledgershealth data publication[SHS.INFO]Humanities and Social Sciences/Library and information sciences

International audience

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.

Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy, University of Toronto, Canada; 9Department of Biochemistry, Faculty of Medicine, University of Torontohttps://ror.org/03dbr7087University of Toronto