Abstract
The COVID-19 crisis has emphasized the importance of the free flow of information and data-driven applications in the management of public health crises. This chapter examines the potential benefits, concerns, and solutions related to sustainable and secure access to public health data. We study some of the data-driven solutions in action worldwide and present them as replicable use cases. We also examine why a large volume of data from public and private sources never reaches the desks of decision-makers and suggest technical and policy solutions to eliminate these sources of ‘data friction’.
Keywords
- Data sharing
- Personal data
- Nonpersonal data
- Public health crises
- Human security
This is a preview of subscription content, access via your institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsReferences
Adler-Milstein J, DesRoches CM, Jha AK (2011) Health information exchange among US hospitals. Am J Manag Care 17(11):761–768. PMID: 22084896. https://pubmed.ncbi.nlm.nih.gov/22084896/
Allam Z, Dey G, Jones DS (2020) Artificial Intelligence (AI) provided early detection of the Coronavirus (COVID-19) in China and will influence future urban health policy internationally. AI 1(2):156–165. https://doi.org/10.3390/ai1020009. https://www.mdpi.com/2673-2688/1/2/9. Accessed 14 Dec 2020
Allen C, Des Jardins TR, Heider A, Lyman KA, McWilliams L, Rein AL, Schachter AA, Singh R, Sorondo B, Topper J, Turske SA (2014) Data governance and data sharing agreements for community-wide health information exchange: lessons from the Beacon communities. eGEMs 2(1):5. https://doi.org/10.13063/2327-9214.1057
Baird RP (2020) How Utah’s tech industry tried to disrupt coronavirus testing. The Newyorker. https://www.newyorker.com/tech/annals-of-technology/how-utahs-tech-industry-tried-to-disrupt-coronavirus-testing. Accessed 14 Dec 2020
Ballesteros A, Roche J, Totty Z (2020) Expansion of the Michigan system for opioid overdose surveillance (SOS) to inform data-driven community responses. Inj Prev 26:A22. https://doi.org/10.1136/injuryprev-2020-savir.55. https://injuryprevention.bmj.com/content/26/Suppl_1/A22.2. Accessed 14 Dec 2020
Balsari S (2014) A digital push for healthcare: portability of data will cut costs, save time. Indian Express. https://indianexpress.com/article/opinion/columns/india-health-sector-data-ecosystem-niti-aayog-national-health-stack-bluebook-6553690/
Bedford T (2020) Early warnings of novel coronavirus from genomic epidemiology and the global open scientific response. Blog at bedford.io. https://bedford.io/blog/genomic-epi-for-ncov-response/. Accessed 14 Dec 2020
Blumenthal D (2010) Launching HITECH. N Engl J Med 362(5):382–385. https://doi.org/10.1056/nejmp0912825. https://www.nejm.org/doi/full/10.1056/NEJMp0912825
Bycroft C, Freeman C, Petkova D, Band G, Elliott LT, Sharp K, Motyer A, Vukcevic D, Delaneau O, O’Connell J, Cortes A, Welsh S, Young A, Effingham M, McVean G, Leslie S, Allen N, Donnelly P, Marchini J (2018) The UK Biobank resource with deep phenotyping and genomic data. Nature 562(7726):203–209. https://doi.org/10.1038/s41586-018-0579-z. https://www.nature.com/articles/s41586-018-0579-z. Accessed 14 Dec 2020
City Data Exchange (2018) City Data Exchange - lessons learned from a private/public data collaboration. Municipality of Copenhagen and Capital Region of Denmark. https://cphsolutionslab.dk/media/pages/projekter/data-platforms/city-data-exchange/1837671186-1612174620/city-data-exchange-cde-lessons-learned-from-a-public-private-data-collaboration.pdf
Corn M (2009) Archiving the phenome: clinical records deserve long-term preservation. J Am Med Inform Assoc 16(1):1–6. https://doi.org/10.1197/jamia.m2925. https://academic.oup.com/jamia/article/16/1/1/864394
DE Framework (2020) Data Exchange Framework for Indian smart cities. Discussion paper. Smart Cities Mission, Ministry of Housing and Urban Affairs (MoHUA), Government of India. http://www.iudx.org.in/archives/Discussion_Paper-Data_Exchange_Framework_for_Indian_Smart_Cities.pdf
Deloitte Report (2020) India smart cities COVID 19 response: case studies. Deloitte. https://www2.deloitte.com/content/dam/Deloitte/in/Documents/public-sector/in-gps-IndiaSmartCitiesCOVID19Response_11Jun_Print-noexp.pdf. Accessed 14 Dec 2020.
Domo Press Release (2020) Domo launches the COVID-19 Crisis Command Center for the State of Iowa. https://www.domo.com/news/press/domo-launches-the-covid-19-crisis-command-center-for-the-state-of-iowa
Dong E, Du H, Gardner L (2020) An interactive web-based dashboard to track COVID-19 in real time. Lancet Infect Dis. https://doi.org/10.1016/s1473-3099(20)30120-1. https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(20)30120-1/fulltext. Accessed 14 Dec 2020
Dong L (2015) Taking the long view of medical records preservation and archives. J Document 71(2):387–400. https://doi.org/10.1108/jd-11-2013-0141. https://www.emerald.com/insight/content/doi/10.1108/JD-11-2013-0141/full/html
Edwards PN (2010) A vast machine: computer models, climate data, and the politics of global warming. MIT Press, Cambridge. https://mitpress.mit.edu/books/vast-machine
Edwards PN, Mayernik MS, Batcheller AL, Bowker GC, Borgman CL (2011) Science friction: data, metadata, and collaboration. Soc Stud Sci 41(5):667–690. https://doi.org/10.1177/0306312711413314. https://journals.sagepub.com/doi/abs/10.1177/0306312711413314
eHealth Exchange (2018) eHealth Exchange overview. https://ehealthexchange.org/what-we-do/ or https://s3.amazonaws.com/seqprojectehex/wp-content/uploads/2018/09/12051759/eHealth-Exchange-Overview-2-20-18.pdf
Ecological Metadata Language (EML) 2011. https://www.dcc.ac.uk/resources/metadata-standards/eml-ecological-metadata-language
ETSI Press Release (2019). ETSI CIM Group Releases full-feature specification for context information exchange in smart cities. https://www.etsi.org/newsroom/press-releases/1519-2019-01-etsi-cim-group-releases-full-feature-specification-for-context-information-exchange-in-smart-cities?jjj=1615695136274
Federal Geographic Data Committee (1998) Content standard for digital geospatial metadata. Metadata Ad Hoc Working Group, Federal Geographic Data Committee. FGDC-STD-001-1998. https://www.fgdc.gov/standards/projects/metadata/base-metadata/index_html
Biological Data Profile (1999) Part 1: content standard for digital geospatial metadata 1998, Biological Data Working Group, Federal Geographic Data Committee and USGS Biological Resources Division. FGDC-STD-001.1-1999. https://www.fgdc.gov/standards/projects/FGDC-standards-projects/metadata/biometadata/biodatap.pdf
FMPHPCE (2014) The Impacts of the Affordable Care Act on preparedness resources and programs: workshop summary. Forum on Medical and Public Health Preparedness for Catastrophic Events; Board on Health Sciences Policy; Board on Health Care Services; Institute of Medicine. National Academies Press (US), Washington, DC. https://www.ncbi.nlm.nih.gov/books/NBK241386/. https://doi.org/10.17226/18755
France-Presse A (2020) South Korea installs anti-virus bus shelters with temperature sensors and UV lamps. The Guardian. https://www.theguardian.com/world/2020/aug/13/south-korea-installs-anti-virus-bus-shelters-with-temperature-sensors-and-uv-lamps. Accessed 14 Dec 2020
Gilad-Bachrach R, Laine K, Lauter K, Rindal P, Rosulek M (2019) Secure data exchange: a marketplace in the Cloud. In: Proceedings of the 2019 ACM SIGSAC Conference on Cloud Computing Security Workshop (CCSW’19). Association for Computing Machinery, New York, pp 117–128. https://doi.org/10.1145/3338466.3358924. https://dl.acm.org/doi/abs/10.1145/3338466.3358924
GitHub: Smart Data Models (2020) FIWARE Foundation, IUDX and TM Forum. https://github.com/smart-data-models/data-models/blob/e40715f2d2914d181146dabd89d66513e4a4a3ce/README.md
Geography Markup Language (GML) (2011). https://www.loc.gov/preservation/digital/formats/fdd/fdd000296.shtml
Grubaugh ND, Saraf S, Gangavarapu K, Watts A, Tan AL, Oidtman RJ et al (2019) Travel surveillance and genomics uncover a Hidden Zika outbreak during the waning epidemic. Cell 178(5):1057–1071.e11. https://doi.org/10.1016/j.cell.2019.07.018. https://www.sciencedirect.com/science/article/pii/S0092867419307834. Accessed 14 Dec 2020
Hadfield J, Megill C, Bell SM, Huddleston J, Potter B, Callender C, Sagulenko P, Bedford T, Neher RA (2018) Nextstrain: real-time tracking of pathogen evolution. Bioinformatics. https://doi.org/10.1093/bioinformatics/bty407. https://academic.oup.com/bioinformatics/article/34/23/4121/5001388. Accessed 14 Dec 2020
Henry J, Pylypchuk Y, Searcy T, Patel V (2016) Adoption of electronic health record systems among U.S. Non-Federal Acute Care Hospitals: 2008–2015. Office of the National Coordinator for Health Information Technology, Washington, DC. https://dashboard.healthit.gov/evaluations/data-briefs/non-federal-acute-care-hospital-ehr-adoption-2008-2015.php
Health Insurance Portability and Accountability Act of 1996 (HIPAA) (1996) Public Law 104–191. 104th Congress, the United States of America. https://www.govinfo.gov/content/pkg/PLAW-104publ191/pdf/PLAW-104publ191.pdf
Challenges and Barriers to Interoperability (2015) Report to Congress. Prepared by The Health Information Technology Policy Committee (a federal advisory committee to the Office of the National Coordinator for Health IT focused on health information technology policy). https://www.healthit.gov/sites/default/files/facas/HITPC_Final_ITF_Report_2015-12-16%20v3.pdf
ISO 19115-1:2014 (2014) Geographic information — Metadata — Part 1: fundamentals. ISO/TC 211 Geographic information/Geomatics. https://www.iso.org/standard/53798.html
ITU-T (2019) Proposal to advance draft technical specification of “data exchange and sharing for supporting IoT and SC&C.” Blockchain-based data exchange and sharing for supporting IoT and SC&C: Technical Specification D3.6. Telecommunication Standardization Sector of ITU 2019. ITU-T Focus Group on Data Processing and Management to support IoT and Smart Cities & Communities. https://www.itu.int/dms_pub/itu-t/opb/fg/T-FG-DPM-2019-3.6-PDF-E.pdf
IUDX: India Urban Data Exchange (2021). https://nudm.mohua.gov.in/wp-content/uploads/2021/02/IUDX-Booklet-FINAL.pdf
Jiao Y, Wang P, Feng S, Niyato D (2018) Profit maximization mechanism and data management for data analytics services. IEEE Internet Things J 5(3):2001–2014. https://doi.org/10.1109/jiot.2018.2819706. https://ieeexplore.ieee.org/abstract/document/8326475
McCarthy DB, Propp K, Cohen A, Sabharwal R, Schachter AA, Rein AL (2014) Learning from health information exchange technical architecture and implementation in seven Beacon communities. eGEMs 2(1):6. https://doi.org/10.13063/2327-9214.1060
Mennemeyer ST, Menachemi N, Rahurkar S, Ford EW (2015) Impact of the HITECH Act on physicians’ adoption of electronic health records. J Am Med Inform Assoc 23(2):375–379. https://doi.org/10.1093/jamia/ocv103. https://academic.oup.com/jamia/article/23/2/375/2572425
Mercatelli D, Triboli L, Fornasari E, Ray F, Giorgi FM (2020) Coronapp: a web application to annotate and monitor SARS-CoV-2 mutations. J Med Virol. https://doi.org/10.1002/jmv.26678. https://onlinelibrary.wiley.com/doi/10.1002/jmv.26678. Accessed 14 Dec 2020
Mora M, Angelini C, Bignami F et al (2014) The EuroBioBank Network: 10 years of hands-on experience of collaborative, transnational biobanking for rare diseases. Eur J Hum Genet 23(9):1116–1123. https://doi.org/10.1038/ejhg.2014.272. https://www.nature.com/articles/ejhg2014272. Accessed 14 Dec 2020
National Digital Health Mission (2020) Guidelines for health information providers, health repository providers, health information users and health lockers. https://ndhm.gov.in/documents/hip_hiu_Policy
Nextstrain/auspice license GNU Affero General Public License v3.0 (2016). https://github.com/nextstrain/auspice/blob/master/LICENSE.txt. Accessed 14 Dec 2020
OECD Expert Workshop on Enhanced Access to Data: Reconciling Risks and Benefits of Data Re-Use, 2018. Working Party on Security and Privacy in the Digital Economy. Danish Business Authority. Directorate for Science, Technology and Innovation: Committee on Digital Economy Policy. http://www.oecd.org/officialdocuments/publicdisplaydocumentpdf/?cote=DSTI/CDEP/SPDE(2018)4&docLanguage=En
ONC (2020) Final Rules of twenty-first Century Cures Act: Interoperability, Information Blocking, and the ONC Health IT Certification Program. Prepared by Office of the National Coordinator for Health Information Technology (ONC), the US Department of Health and Human Services (HHS). https://www.federalregister.gov/documents/2020/05/01/2020-07419/21st-century-cures-act-interoperability-information-blocking-and-the-onc-health-it-certification
Open Science Prize (2017). nextstrain.org wins Open Science Prize! https://www.openscienceprize.org/p/s/2023040/
Park Han-na (2020) Seoul unveils virus-blocking bus shelter. The Korea Herald. http://www.koreaherald.com/view.php?ud=20200806000634. Accessed 14 Dec 2020
Park M (2020) Keeps out rain and COVID-19, Seoul tries smart bus shelter to fight virus. Reuters. https://uk.reuters.com/article/amp/idINKCN25A1U4. Accessed 14 Dec 2020
Personal Data Protection Bill (2019) The Republic of India. Bill No. 373 of 2019. http://164.100.47.4/BillsTexts/LSBillTexts/Asintroduced/373_2019_LS_Eng.pdf
PIB (2020a) 5th Anniversary of Urban Missions. Ministry of Housing & Urban Affairs. Press Information Bureau, Government of India. https://pib.gov.in/PressReleaseIframePage.aspx?PRID=1634268. Accessed 14 Dec 2020
PIB (2020b) Smart city missions integrated data dashboards being used at Command and Control Centres to monitor COVID-19. Ministry of Housing & Urban Affairs. Press Information Bureau, Government of India. https://pib.gov.in/PressReleasePage.aspx?PRID=1611592. Accessed 14 Dec 2020
Radhakrishna K, Goud BR, Kasthuri A, Waghmare A, Raj T (2014) Electronic health records and information portability: a pilot study in a rural primary healthcare center in India. Perspect Health Inf Manag 11:1b. https://europepmc.org/article/pmc/pmc4142510
Reisman M (2017) EHRs: the challenge of making electronic data usable and interoperable. Pharm Ther 42(9):572–575. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5565131/
Royal CD, Novembre J, Fullerton SM, Goldstein DB, Long JC, Bamshad MJ, Clark AG (2010) Inferring genetic ancestry: opportunities, challenges, and implications. Am J Hum Genet 86(5):661–673. https://doi.org/10.1016/j.ajhg.2010.03.011. https://www.sciencedirect.com/science/article/pii/S0002929710001552
Seoul Press Release (2020) Seoul city, bus stop upgrades to the world’s first ‘Smart Shelter’. Smart City, South Korea. Ministry of Land, Infrastructure and Transport. https://smartcity.go.kr/en/2020/06/09/서울시-버스정류소-세계최초-스마트쉘터로-전면-업/, https://www.seoul.go.kr/news/news_report.do#view/318141. Accessed 14 Dec 2020
Shriver MD, Kittles RA (2004) Genetic ancestry and the search for personalized genetic histories. Nat Rev Genet 5(8):611–618. https://doi.org/10.1038/nrg1405. https://www.nature.com/articles/nrg1405
Sikeridis D, Bidram A, Devetsikiotis M, Reno MJ (2020) A blockchain-based mechanism for secure data exchange in smart grid protection systems. In: 2020 IEEE 17th annual consumer communications & networking conference (CCNC). https://doi.org/10.1109/ccnc46108.2020.9045368. https://ieeexplore.ieee.org/document/9045368
Sudlow C, Gallacher J, Allen N, Beral V, Burton P, Danesh J et al (2015) UK biobank: an open access resource for identifying the causes of a wide range of complex diseases of middle and old age. PLoS Med 12(3):e1001779. https://journals.plos.org/plosmedicine/article?id=10.1371/journal.pmed.1001779. Accessed 14 Dec 2020
NORC, University of Chicago (2014) Data sharing to enable clinical transformation at the community level: IT takes a village. Evaluation of the Beacon Community Cooperative Agreement Program. https://www.healthit.gov/sites/default/files/beacondatasharingbrief062014.pdf
UK Biobank creates cloud-based health Data Analysis Platform to unleash the imaginations of the world’s best scientific minds (2020). https://www.ukbiobank.ac.uk/learn-more-about-uk-biobank/news/uk-biobank-creates-cloud-based-health-data-analysis-platform-to-unleash-the-imaginations-of-the-world-s-best-scientific-minds
United Nations Trust Fund for Human Security (2016) Human security handbook. https://www.un.org/humansecurity/wp-content/uploads/2017/10/h2.pdf
Verstaevel N et al (2020) Assessing the effects of mobility on air quality: The Liverpool Smart Pedestrian project. Transport Res Proc 48:2197–2206. https://www.sciencedirect.com/science/article/pii/S2352146520306967. Accessed 14 Dec 2020
West DR, Radcliff TA, Brown T, Cote MJ, Smith PC, Dickinson WP (2012) Costs associated with data collection and reporting for diabetes quality improvement in primary care practices: a report from SNOCAP-USA. J Am Board Fam Med 25(3):275–282. https://doi.org/10.3122/jabfm.2012.03.110049. https://europepmc.org/article/med/22570390
World Health Assembly, 54 (2001) Global health security - epidemic alert and response: report by the Secretariat. World Health Organization. https://apps.who.int/iris/handle/10665/78718
Yao K, Park MK (2020) Strengthening data governance for effective use of open data and big data analytics for combating COVID-19. UN/DESA Policy Brief 89. UN Project Office on Governance, Division for Public Institutions and Digital Government, UN Department of Economic and Social Affairs—DESA. https://www.un.org/development/desa/dpad/publication/un-desa-policy-brief-89-strengthening-data-governance-for-effective-use-of-open-data-and-big-data-analytics-for-combating-covid-19
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2022 The Author(s), under exclusive license to Springer Nature Singapore Pte Ltd.
About this chapter
Cite this chapter
Patil, R., Gopal, I. (2022). The Importance of Data Sharing in Managing Public Health Crises. In: Shaw, R., Gurtoo, A. (eds) Global Pandemic and Human Security. Springer, Singapore. https://doi.org/10.1007/978-981-16-5074-1_21
Download citation
DOI: https://doi.org/10.1007/978-981-16-5074-1_21
Published:
Publisher Name: Springer, Singapore
Print ISBN: 978-981-16-5073-4
Online ISBN: 978-981-16-5074-1
eBook Packages: Social SciencesSocial Sciences (R0)