Crisis, Culture and Health Case Studies
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The document discusses three case studies from the BYTE project: 1) Crisis informatics uses social media data and crisis maps to provide faster disaster relief. It faces challenges regarding privacy and data reliability. 2) Cultural data aggregates over 25 million digitized cultural heritage objects in Europe but struggles with intellectual property rights and copyright. 3) Health data aims to discover new genetic links for rare diseases through sequencing but is limited by funding, regulations, and risks of discrimination.
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Crisis, Culture and Health Case Studies
- 1. BYTE: A-XLRM summary for BYTE case studies Rachel Finn Trilateral Research, Ltd. BYTE project coordinator Big data roadmap and cross-disciplinary community for addressing societal externalities Crisis, culture and health 10 February 2016
- 2. Crisis informatics case study Background information ◦ Undertaken with the Research Institute for Crisis Computing ◦ Machine computing and human computing to make crisis maps from social media ◦ RICC provides the open source tool to humanitarian organisations and manages interaction between inputs and outputs ◦ Data characteristics ◦ 100,000s messages and images/day
- 3. @BYTE_EU www.byte-project.eu Actors & Stakeholders Actors • RICC • Humanitarian organisations • Government • Firms: big data capabilities • Firms: big data providers Stakeholders • Social media users • Local communities • Those affected by crises
- 4. @BYTE_EU www.byte-project.eu External forces & policy levers • For governments • Making additional data sources open • For RICC and data centres • Reducing the digital divide • Harmonising laws Policy levers • Climate change • Natural disasters • Political conflicts External forces
- 6. @BYTE_EU www.byte-project.eu Measures of merit Positive • Faster relief • Better resource predictions • New business models through open data • Infrastructure and technology improvements Negative • Privacy issues, incl. data misuse • IPR issues • Distraction from core humanitarian tasks • Difficulty assessing data reliability
- 7. Cultural data case study Background information ◦ Undertaken with A Pan-European Cultural Heritage Organisation (PECHO) ◦ EU-funded aggregator of more than 25 million digitised objects from cultural heritage institutions in Europe ◦ Incl., books, sculptures, paintings, films, maps, audio recordings, etc. ◦ Data is primarily comprised of metadata outlining other organisations’ collections
- 8. @BYTE_EU www.byte-project.eu Actors & Stakeholders Actors • National European cultural heritage organisations • PECHO • Policy makers • Legal professionals • Public and private funding bodies Stakeholders • General public • Libraries, archives, galleries, museums • Open data advocates
- 9. @BYTE_EU www.byte-project.eu External forces & policy levers • National and European governments as major sources of funding and policy framework • Managing intellectual property issues/ copyright reform Policy levers • Clearer information on data sources • Copyright issues • Qualified workforce • Diverse European language • American dominance over infrastructure External forces
- 10. @BYTE_EU www.byte-project.eu Relationships European cultural heritage organisations Cultural heritage organisations in 3rd countries National cultural heritage organisations
- 11. @BYTE_EU www.byte-project.eu Measures of merit Positive • Exploiting the metadata • Innovations of cultural services • New applications & business models within cultural heritage Negative • IPR and copyright challenges • Ethics of opportunistic search engines
- 12. Health case study Background information ◦ Undertaken with a university-based Genetic Research Initiative ◦ Discovery of new genetic links in relation to rare childhood diseases to aid treatment ◦ Data is primarily comprised of genetic profiles, which are growing in size as new sequencing techniques become more affordable
- 13. @BYTE_EU www.byte-project.eu Actors & Stakeholders Actors • Health policy-makers • National Health Service • Genetic Research Initiative • Scientists and labs conducting genetic sequencing • Medical professionals Stakeholders • Patients and family members • Computational geneticists • Academics
- 14. @BYTE_EU www.byte-project.eu External forces & policy levers • Health policy • Regulations • Funding restrictions • Treatment service restrictions • GRI • New business models based on genetic data Policy levers • National healthcare policies • Disease outbreaks • Personal data protection laws External forces
- 16. @BYTE_EU www.byte-project.eu Measures of merit Positive • Better treatments in near- term and long-term • Reduction of costs • Better research • Better access to information through open data Negative • Access to equipment • Budget restrictions • Discrimination because of income or disease category • Discrimination as a result of re-identification
- 17. @BYTE_EU www.byte-project.eu Thank you for your attention! Key contacts: ◦ Rachel Finn, rachel.finn@trilateralresearch.com ◦ Kush Wadhwa, kush.wadhwa@trilateralresearch.com Website: www.byte-project.eu BYTE on Twitter: @BYTE_EU
Notes de l'éditeur
- Harmonizing laws: dealing with territoriality of data as it is often crossing international borders with different legal regimes.
- Harmonizing laws: dealing with territoriality of data as it is often crossing international borders with different legal regimes.
- Harmonizing laws: dealing with territoriality of data as it is often crossing international borders with different legal regimes.