Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain
Peter Pennefather (1), West Suhanic (2), Fatima Lakha (2), Deborah 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
Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain
Peter Pennefather (1), West Suhanic (2), Fatima Lakha (2), Deborah 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
Résumé
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
français
[SHS.INFO]Humanities and Social Sciences/Library and information sciences
anglais
private health data
distributed ledgers
health data publication
Cité par
Source : OpenCitations
Socially Embodied AI: A Framework for Recognizing the Dynamic Sociality of Artificial Agents Within and Beyond Healthcare (Preprint)
Auteurs/Autrices : Katie Seaborn, Norihisa P. Miyake, Peter Pennefather, Mihoko Otake-Matsuura
