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

Peter Pennefather (1) , West Suhanic (2) , Fatima Lakha (2) , Deborah I Fels (2)

1 Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy, University of Toronto, Canada; 9Department of Biochemistry, Faculty of Medicine, University of Toronto
2 University of Toronto

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.

Mots clés: private health data; distributed ledgers; health data publication

Domaines: Sciences de l'information et de la communication

Peter Pennefather, West Suhanic, Fatima Lakha, Deborah I 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⟩