engElPub - ELectronic PUBlishing2018-06-20Connecting the Knowledge...Short Papers10.4000/proceedings.elpub.2018.154623journal articlePeter Pennefather0West Suhanic1Fatima Lakha1Deborah Fels1Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy, University of Toronto, Canada; 9Department of Biochemistry, Faculty of Medicine, University of TorontoUniversity of TorontoAn 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.http://elpub.episciences.org/4623/pdfprivate health datadistributed ledgershealth data publication[SHS.INFO]Humanities and Social Sciences/Library and information sciences