<article xmlns:xlink="http://www.w3.org/1999/xlink" xml:lang="en"><front><journal-meta><journal-id journal-id-type="publisher">episciences.org</journal-id><journal-title-group><journal-title>ElPub - ELectronic PUBlishing</journal-title><abbrev-journal-title>ELPUB</abbrev-journal-title></journal-title-group><publisher><publisher-loc><email>support@episciences.org</email><uri>https://www.episciences.org</uri><uri>https://elpub.episciences.org</uri></publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="doi">10.4000/proceedings.elpub.2018.15</article-id><article-id pub-id-type="hal">hal-01816653</article-id><article-id pub-id-type="publisher-id">http://elpub.episciences.org/4623</article-id><article-catgories><series-text content-type="text">Short Papers</series-text></article-catgories><title-group><article-title xml:lang="en">Publishing Authentic, Private, Personal Data About Service Quality of Healthcare for Pain</article-title></title-group><contrib-group><contrib contrib-type="author"><name><surname>Pennefather</surname><given-names>Peter</given-names></name><institution-wrap><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</institution_name></institution></institution-wrap></contrib><contrib contrib-type="author"><name><surname>Suhanic</surname><given-names>West</given-names></name><institution-wrap><institution><institution_id type="ror">https://ror.org/03dbr7087</institution_id><institution_name>University of Toronto</institution_name></institution></institution-wrap></contrib><contrib contrib-type="author"><name><surname>Lakha</surname><given-names>Fatima</given-names></name><institution-wrap><institution><institution_id type="ror">https://ror.org/03dbr7087</institution_id><institution_name>University of Toronto</institution_name></institution></institution-wrap></contrib><contrib contrib-type="author"><name><surname>Fels</surname><given-names>Deborah</given-names></name><institution-wrap><institution><institution_id type="ror">https://ror.org/03dbr7087</institution_id><institution_name>University of Toronto</institution_name></institution></institution-wrap></contrib></contrib-group><pub-date pub-type="epub"><day>20</day><month>06</month><year>2018</year></pub-date><volume>Connecting the Knowledge Commons: From Projects to Sustainable Infrastructure</volume><uri specific-use="for-review">http://elpub.episciences.org/4623/pdf</uri><self-uri>http://elpub.episciences.org/4623</self-uri><abstract xml:lang="en"><p>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.</p></abstract><kwd-group kwd-group-type="author" xml:lang="en"><kwd>private health data</kwd><kwd>distributed ledgers</kwd><kwd>health data publication</kwd><kwd>[SHS.INFO]Humanities and Social Sciences/Library and information sciences</kwd></kwd-group><permissions><copyright-year>2018</copyright-year><copyright-holder>The Author(s)</copyright-holder><license license-type="open-access" xlink:href="https://creativecommons.org/licenses/by/4.0"/></permissions><counts><page-count count="9"/></counts></article-meta></front><body/></article>