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"version": 61, "itemType": "journalArticle", "title": "Who Owns The Data? Open Data for health care", "creators": [ { "creatorType": "author", "firstName": "Patty", "lastName": "Kostkova" }, { "creatorType": "author", "firstName": "Helen", "lastName": "Brewer" }, { "creatorType": "author", "firstName": "Simon", "lastName": "de Lusignan" }, { "creatorType": "author", "firstName": "Edward", "lastName": "Fottrell" }, { "creatorType": "author", "firstName": "Ben", "lastName": "Goldacre" }, { "creatorType": "author", "firstName": "Graham", "lastName": "Hart" }, { "creatorType": "author", "firstName": "Phil", "lastName": "Koczan" }, { "creatorType": "author", "firstName": "Peter", "lastName": "Knight" }, { "creatorType": "author", "firstName": "Corinne", "lastName": "Marsolier" }, { "creatorType": "author", "firstName": "Rachel", "lastName": "McKendry" }, { "creatorType": "author", "firstName": "Emma", "lastName": "Ross" }, { "creatorType": "author", "firstName": "Angela", "lastName": "Sasse" }, { "creatorType": "author", "firstName": "Ralph", "lastName": "Sullivan" }, { "creatorType": "author", "firstName": "Sarah", "lastName": "Chaytor" }, { "creatorType": "author", "firstName": "Raquel", "lastName": "Velho" }, { "creatorType": "author", "firstName": "Olivia", "lastName": "Stevenson" }, { "creatorType": "author", "firstName": "John", "lastName": "Tooke" } ], "abstractNote": "Research on large shared medical datasets and data-driven research are gaining fast momentum and provide major opportunities for improving health systems as well as individual care. Such Open Data can shed light on the causes of disease and effects of treatment including adverse reactions side-effects of treatments, while also facilitating analyses tailored to an individual individual’s characteristics, known as personalised or “stratified medicine”. Developments such as crowdsourcing, participatory surveillance, individuals pledging to became ‘data donors’ and the ‘quantified self’ movement (where citizens share data through mobile device-connected technologies) have great potential to contribute to our knowledge of disease, improving diagnostics and delivery of healthcare and treatment.However, alongside the clear potential, there are also concerns over privacy, confidentiality, and control of data about individuals once it is shared. Issues such as user trust, data privacy, transparency over the control of data ownership, and the implications of data analytics for personal privacy with potentially intrusive inferences are becoming increasingly scrutinised at national and international levels. This can be seen in the recent backlash over the proposed implementation of care.data, which enables individuals’ NHS data to be linked, retained, and shared for other uses, such as research and, more controversially, with businesses for commercial exploitation. By way of contrast, through increasing popularity of social media, GPS-enabled mobile apps and tracking/wearable devices, the IT industry and MedTech giants are pursuing new projects without clear public and policy discussion about ownership and responsibility for user-generated data.In the absence of transparent regulation this papers", "publicationTitle": "Digital Health", "publisher": "", "place": "", "date": "2016", "volume": "4", "issue": "", "section": "", "partNumber": "", "partTitle": "", "pages": "7", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "Front. Public Health", "DOI": "10.3389/fpubh.2016.00007", "citationKey": "", "url": "http://journal.frontiersin.org/article/10.3389/fpubh.2016.00007/abstract", "accessDate": "2016-02-09T13:59:19Z", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "Who Owns The Data?", "language": "", "libraryCatalog": "Frontiers", "callNumber": "", "rights": "", "extra": "", "tags": [ { "tag": "Data policy", "type": 1 }, { "tag": "Open Data", "type": 1 }, { "tag": "Privacy", "type": 1 }, { "tag": "data ownership", "type": 1 }, { "tag": "healthcare EPR", "type": 1 } ], "collections": [], "relations": {}, "dateAdded": "2016-02-09T13:59:19Z", "dateModified": "2016-02-09T13:59:19Z" } }, { "key": "27IDKENU", "version": 61, "library": { "type": "group", "id": 435366, "name": "Openness, value and copyright", "links": { "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/435366/items/27IDKENU", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright/items/27IDKENU", "type": "text/html" } }, "meta": { "createdByUser": { "id": 1608526, "username": "matthewsmith12", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/matthewsmith12", "type": "text/html" } } }, "lastModifiedByUser": { "id": 852154, "username": "carla_bonina", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/carla_bonina", "type": "text/html" } } }, "creatorSummary": "Davies", "parsedDate": "2015-07-15", "numChildren": 1 }, "data": { "key": "27IDKENU", "version": 61, "itemType": "report", "title": "Open Data in Developing Countries: Emerging Insights from Phase I", "creators": [ { "creatorType": "author", "firstName": "Tim", "lastName": "Davies" } ], "abstractNote": "", "reportNumber": "", "reportType": "", "institution": "World Wide Web Foundation", "place": "Berlin, Germany", "date": "July 15 2015", "seriesTitle": "", "seriesNumber": "", "pages": "", "DOI": "", "ISBN": "", "citationKey": "", "url": "http://www.opendataresearch.org/content/2014/704/open-data-developing-countries-emerging-insights-phase-i", "accessDate": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [], "relations": {}, "dateAdded": "2015-12-22T20:07:26Z", "dateModified": "2015-12-22T20:07:26Z" } }, { "key": "NTH2SD94", "version": 47, "library": { "type": "group", "id": 435366, "name": "Openness, value and copyright", "links": { "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/435366/items/NTH2SD94", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright/items/NTH2SD94", "type": "text/html" }, "up": { "href": "https://api.zotero.org/groups/435366/items/27IDKENU", "type": "application/json" } }, "meta": { "createdByUser": { "id": 1608526, "username": "matthewsmith12", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/matthewsmith12", "type": "text/html" } } }, "numChildren": 0 }, "data": { "key": "NTH2SD94", "version": 47, "parentItem": "27IDKENU", "itemType": "attachment", "linkMode": "imported_file", "title": "Phase 1 - Synthesis - Full Report-print(1).pdf", "accessDate": "", "url": "", "note": "", "contentType": "application/pdf", "charset": "", "filename": "Phase 1 - Synthesis - Full Report-print(1).pdf", "md5": null, "mtime": null, "tags": [], "relations": {}, "dateAdded": "2015-12-22T20:07:26Z", "dateModified": "2015-12-22T20:07:26Z" } }, { "key": "58KT9FKM", "version": 46, "library": { "type": "group", "id": 435366, "name": "Openness, value and copyright", "links": { "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/435366/items/58KT9FKM", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright/items/58KT9FKM", "type": "text/html" } }, "meta": { "createdByUser": { "id": 1608526, "username": "matthewsmith12", "name": "", "links": { "alternate": { "href": "https://www.zotero.org/matthewsmith12", "type": "text/html" } } }, "creatorSummary": "Willmers et al.", "parsedDate": "2015", "numChildren": 1 }, "data": { "key": "58KT9FKM", "version": 46, "itemType": "journalArticle", "title": "Licensing Open Data in Developing Countries - The Case of the Kenyan and City of Cape Town Open Data Initiatives.pdf", "creators": [ { "creatorType": "author", "firstName": "Michelle", "lastName": "Willmers" }, { "creatorType": "author", "firstName": "Francois", "lastName": "van Schalwyk" }, { "creatorType": "author", "firstName": "Tobias", "lastName": "Schonwetter" } ], "abstractNote": "Open data practice is gaining momentum in the public sector and civil society as an important mechanism for sharing information, aiding transparency, and promoting socio-economic development. Within this context, licensing is a key legal mechanism that enables re-use without\nsanction. However, there is evidence of a “licensing deficit” and this raises questions regarding best practice and sustainability in emerging African open data initiatives, particularly in the context of intermediaries being encouraged to exploit shared data for economic and social benefit. This\narticle asks two main questions: (1) What is the current state of open licensing in two African open data initiatives; and (2) to what degree is it\nappropriate to focus on licensing as a key indicator of openness? Utilising a case study approach, the research explored licensing dynamics in the Kenya Open Data and the City of Cape Town Open Data initiatives, examining the contexts in which these initiatives were established and their resulting licensing frameworks. The cases reveal evidence of strategic engagement with content licensing, driven largely by the need for legal protection, adherence to international best practice and attraction of the user base required in order to ensure sustainability. The application of licensing systems in both contexts does, however, suggest an emerging system in which data providers are “learning by doing” and evolving their licensing practice as portals and their associated policy frameworks mature. The paper discusses the value of open data licensing as an indicator of organisational change and concomitant importance of taking into consideration the institutional dynamics when evaluating the organisational\nlicensing frameworks of city, national and other governments.", "publicationTitle": "The African Journal of Information and Communication (AJIC)", "publisher": "", "place": "", "date": "2015", "volume": "", "issue": "16", "section": "", "partNumber": "", "partTitle": "", "pages": "", "series": "", "seriesTitle": "", "seriesText": "", "journalAbbreviation": "", "DOI": "", "citationKey": "", "url": "", "accessDate": "", "PMID": "", "PMCID": "", "ISSN": "", "archive": "", "archiveLocation": "", "shortTitle": "", "language": "", "libraryCatalog": "", "callNumber": "", "rights": "", "extra": "", "tags": [], "collections": [], "relations": {}, "dateAdded": "2015-12-17T14:13:53Z", "dateModified": "2015-12-18T20:26:57Z" } }, { "key": "ANKB5X8S", "version": 44, "library": { "type": 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"accessDate": "", "url": "", "note": "", "contentType": "application/pdf", "charset": "", "filename": "Licensing Open Data in Developing Countries - The Case of the Kenyan and City of Cape Town Open Data Initiatives.pdf", "md5": null, "mtime": null, "tags": [], "relations": {}, "dateAdded": "2015-12-17T14:13:34Z", "dateModified": "2015-12-17T14:13:53Z" } }, { "key": "GDDVFING", "version": 39, "library": { "type": "group", "id": 435366, "name": "Openness, value and copyright", "links": { "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright", "type": "text/html" } } }, "links": { "self": { "href": "https://api.zotero.org/groups/435366/items/GDDVFING", "type": "application/json" }, "alternate": { "href": "https://www.zotero.org/groups/openness_value_and_copyright/items/GDDVFING", "type": "text/html" } }, "meta": { "createdByUser": { "id": 1608526, "username": "matthewsmith12", "name": "", "links": { "alternate": { "href": 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