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Open data in Health Science: towards achieving the SDGs/John Ataguba

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Presented as part of the session on “How open data can contribute to achieving the UN SDGs”, during the BioVision2018 conference in Alexandria, Egypt.

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Open data in Health Science: towards achieving the SDGs/John Ataguba

  1. 1. Open data in Health Science: towards achieving the SDGs Director, Health Economics Unit & Associate Professor University of Cape Town Interim Research Leader, South African Research Chair in Health & Wealth John E. Ataguba, PhD BioVisionAlexandria 2018 20 April 2018
  2. 2. What is open data? • “Knowledge is open if anyone is free to access, use, modify, and share it — subject, at most, to measures that preserve provenance and openness” — https://opendefinition.org/od/2.1/en/ Availability and Access Re-use and redistribution Universal participation
  3. 3. Principles of open data Complete Primary Timely Accessible • All public data are made available. Public data are data that are not subject to valid privacy, security or privilege limitations • Data are collected at the source, with the highest possible level of granularity, not in aggregate or modified forms • Data are made available as quickly as necessary to preserve the value of the data • Data are available to the widest range of users for the widest range of purposes Source: http://www.opengovdata.org
  4. 4. Principles of open data Machine processable Non- discriminatory Non- proprietary License-free • Data are reasonably structured to allow automated processing • Data are available to anyone, with no requirement of registration • Data are available in a format over which no entity has exclusive control • Data are not subject to any copyright, patent, trademark or trade secret regulation. Reasonable privacy, security and privilege restrictions may be allowed Source: http://www.opengovdata.org
  5. 5. Economics of open data • Open data as a public good • Non-rivalrous • The use of data does not diminish their availability for others to use • Non-excludable • Once data are provided, it should be (reasonably) impossible to exclude anyone from accessing and using them • Open data and option value • The availability and accessibility of open data has value in itself, even if they are not used immediately
  6. 6. Open data, ethical issues and fair information practice principles Notice •Individuals are informed that data are being generated and the purpose to which the data will be put Choice •Individuals have the choice to opt in/out as to whether and how their data will be used or disclosed Consent •Data are only generated and disclosed with the consent of individuals Security •Data are protected from loss, misuse, unauthorized access, disclosure, alteration and destruction Integrity •Data are reliable, accurate, complete and current Access •Individuals can access, check and verify data about themselves Accountability •Data holder is accountable for ensuring these principles and has mechanisms in place to ensure compliance Source: Minelli et al. (2013)
  7. 7. Open data and data privacy in the health sector Invasion Information dissemination Information processing Information collection • Surveillance • Interrogation • Aggregation • Identification • Insecurity • Secondary use • Exclusion • Breach of confidentiality • Disclosure • Exposure • Increased accessibility • Blackmail • Appropriation • Distortion • Intrusion • Decisional interference Source: Solove (2006) extracted from Kitchin (2014) PrivacybreachDomain
  8. 8. Health research process as “open data” Source: https://www.fosteropenscience.eu/node/1420 • See links to the principles of open data
  9. 9. Health research as open data • Published research reports, journal articles, policy briefs, protocols, etc. • Systematic reviews as open data for health • Open access publication and health research and scholarship • Business hijack?
  10. 10. • Data: • Qualitative • Quantitative • Mixed • Data: necessary ingredient for development • Policy formulation • Programme design • Monitoring and evaluation • Traditional data systems  modern data systems • The role of technology • Role of national and local statistical systems Data Household and agricultural surveys Administrative data Civil registration and vital statistics Economic statistics (e.g. LFS) Census Geospatial Agricultural survey Environmental data
  11. 11. Source: https://www.europeandataportal.eu/ Source: https://www.geospatialworld.net/
  12. 12. Source: www.klipfolio.com Open data and the “health” SDGs • Completeness • Frequency and timeliness • Available as and at when needed (e.g. maternal mortality data) • Accessibility • Available, acceptable, affordability (i.e. “free”) • Primary • Disaggregation for e.g., equity analysis and policy intervention • Usable • Local relevance Reproductive, maternal, newborn and child health Infectious diseases NCDs and mental health Health system financing Other health risks
  13. 13. Open data repositories Source: https://www.re3data.org Repositories run by institutions exist Repositories run by institutions do not exist Country # of repositories Tunisia 1 Egypt 1 Senegal 1 Côte d'Ivoire 1 Burkina Faso 2 Ghana 2 Benin 2 Cameroon 1 Kenya 3 South Africa 6 Africa
  14. 14. Challenges of data (incl. open data) in Africa • Limitations in the data in itself • Completeness, adequacy, etc. • Timeliness of data • E.g. Data on health spending collected every five years • Lack of well functioning health information system • Including civil registration and vital statistics (CRVS) systems • Poor appreciation of data • Poor data infrastructure • Limited open data portals in Africa • Data and politics in Africa • Do data support any political stance? (Yes  release; No  embargo?)
  15. 15. Thank you! ! ‫شكرا‬‫على‬‫االهتمام‬
  16. 16. Acknowledgements

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