{"journal": {"journal_issue": {"issue": "Short Papers", "journal_volume": {"volume": "Connecting the Knowledge..."}, "publication_date": {"day": "20", "year": "2018", "month": "06", "@media_type": "online"}}, "journal_article": {"titles": {"title": "Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain"}, "program": [{"@name": "AccessIndicators", "license_ref": [{"value": "https://creativecommons.org/licenses/by/4.0", "@applies_to": "am", "@start_date": "2018-06-20"}, {"value": "https://creativecommons.org/licenses/by/4.0", "@applies_to": "vor", "@start_date": "2018-06-20"}, {"value": "https://creativecommons.org/licenses/by/4.0", "@applies_to": "tdm", "@start_date": "2018-06-20"}], "free_to_read": {"value": "", "@start_date": "2018-06-20"}}, {"related_item": {"intra_work_relation": {"value": "https://hal.science/hal-01816653v1", "@identifier-type": "uri", "@relationship-type": "isSameAs"}}}], "abstract": {"value": {"value": "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.", "@xml:lang": "en"}}, "doi_data": {"doi": "10.4000/proceedings.elpub.2018.15", "resource": "http://elpub.episciences.org/4623", "collection": [{"item": {"@crawler": "iParadigms", "resource": "https://hal.science/hal-01816653v1/document"}, "@property": "crawler-based"}, {"item": {"resource": {"value": "https://hal.science/hal-01816653v1/document", "@mime_type": "application/pdf"}}, "@property": "text-mining"}]}, "keywords": {"0": "[SHS.INFO]Humanities and Social Sciences/Library and information sciences", "en": ["private health data", "distributed ledgers", "health data publication"]}, "@language": "en", "contributors": {"person_name": [{"surname": "Pennefather", "@sequence": "first", "given_name": "Peter", "affiliations": {"institution": {"institution_name": "Department of Pharmaceutical Sciences, Leslie Dan Faculty of Pharmacy, University of Toronto, Canada; 9Department of Biochemistry, Faculty of Medicine, University of Toronto"}}, "@contributor_role": "author"}, {"surname": "Suhanic", "@sequence": "additional", "given_name": "West", "affiliations": {"institution": {"institution_id": {"@type": "ror", "value": "https://ror.org/03dbr7087"}, "institution_name": "University of Toronto"}}, "@contributor_role": "author"}, {"surname": "Lakha", "@sequence": "additional", "given_name": "Fatima", "affiliations": {"institution": {"institution_id": {"@type": "ror", "value": "https://ror.org/03dbr7087"}, "institution_name": "University of Toronto"}}, "@contributor_role": "author"}, {"surname": "Fels", "@sequence": "additional", "given_name": "Deborah", "affiliations": {"institution": {"institution_id": {"@type": "ror", "value": "https://ror.org/03dbr7087"}, "institution_name": "University of Toronto"}}, "@contributor_role": "author"}]}, "publisher_item": {"item_number": {"value": "4623", "@item_number_type": "article_number"}}, "acceptance_date": {"day": "20", "year": "2018", "month": "06", "@media_type": "online"}, "publication_date": {"day": "20", "year": "2018", "month": "06", "@media_type": "online"}, "@publication_type": "full_text"}, "journal_metadata": {"@language": "en", "full_title": "ElPub - ELectronic PUBlishing"}}, "database": {"current": {"url": "http://elpub.episciences.org/4623", "flag": "imported", "type": {"title": "conferenceobject"}, "dates": {"posted_date": "2018-06-20 22:15:36", "publication_date": "2018-06-20 22:43:05", "modification_date": "2025-03-31 23:03:06", "first_submission_date": "2018-06-20 22:15:36"}, "files": {"link": "http://elpub.episciences.org/4623/pdf"}, "isTmp": false, "status": {"id": 16, "label": {"en": "published", "fr": "publié"}}, "volume": {"id": 339, "year": "2018", "number": 1, "titles": {"en": "Connecting the Knowledge Commons: From Projects to Sustainable Infrastructure"}, "position": "1", "settings": {"is_open": false, "is_current_issue": false, "is_special_issue": false}, "descriptions": {"en": "ELPUB 2018 marks the 22nd edition of the International Conference in ELectronic PUBlishing and the 10th anniversary of the meeting being held in Toronto."}, "has_proceedings": false, "bibliographical_references": ""}, "journal": {"id": 16, "url": "http://elpub.episciences.org", "code": "elpub", "name": "ElPub - ELectronic PUBlishing"}, "metrics": {"file_count": "288", "page_count": "308"}, "section": {"id": 89, "titles": {"en": "Short Papers"}, "position": 2, "settings": {"is_open": true}, "descriptions": null}, "version": 1, "cited_by": {"453": {"id": "453", "docid": "4623", "citation": "{\"0\":{\"type\":null,\"author\":\"Katie Seaborn, 0000-0002-7812-9096; Norihisa P. 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