Unlocking the value of data - Independent Expert Group: final report

This report is the final output of the Independent Expert Group on the Unlocking the Value of Data programme, to the Scottish Government. This report is a Ministerial commission, and was originally commissioned by the former Minister for Business, Trade, Tourism and Enterprise.


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Aitken, M., Porteous, C., Creamer, E., & Cunningham-Burley, S. (2018). Who benefits and how? Public expectations of public benefits from data-intensive health research. Big Data & Society, 5(2). doi:10.1177/2053951718816724

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Berti Suman, A. & Switzer, S. (2022). Private sector access to public sector personal data: exploring data value and benefit-sharing. (Scottish Government commissioned literature review).

Briken, K., and Taylor, P. (2018) Fulfilling the 'British way': beyond constrained choice—Amazon workers' lived experiences of workfare. Industrial Relations Journal, 49, 438– 458. doi:10.1111/irj.12232.

Browning, M., and Arrigo, B. (2021) Stop and Risk: Policing, Data, and the Digital Age of Discrimination. American Journal of Criminal Justice, 46 (2), 298-316. doi:0.1007/s12103-020-09557-x

Caroll Rainie, S., Kukutai, T., Walter, M., Figueroa-Rodriguez, O.L., Walker, J., & Axelsson, P. (2019). Indigenous data sovereignty. In T. Davies, S. Walker, M. Rubinstein & F. Perini (Eds.), The State of Open Data: Histories and Horizons. Cape Town and Ottawa: African Minds and International Development Research Centre.

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Cheung, S. (2020). Disambiguating the benefits and risks from public health data in the digital economy. Big Data & Society, 7(1). doi:10.1177/2053951720933924

Daly, A. (2016). Private Power, Online Information Flows and EU Law: Mind the Gap. Oxford: Hart Publishing.

Daly, A., Devitt, S.K., & Mann, M. (Eds.) (2019). Good Data. Amsterdam: Institute of Network Cultures.

Democratic Society (2023). Unlocking the Value of Data - Overview of Engagement, Review of Principles and Next Steps for Practical Use. (Scottish Government commissioned report).

Dencik, L., Hintz, A., Redden, J., & Trere, E. (2022). Data Justice. Thousand Oaks, CA: SAGE.

Digital Ethics Expert Group. (2022). Building Trust in the Digital Era: Achieving Scotland's Aspirations as an Ethical Digital Nation. Retrieved from https://eprints.gla.ac.uk/284484/1/284484.pdf

Durante, M. (2021). Computational Power: The Impact of ICT on Law, Society and Knowledge. Abingdon: Routledge.

Dyer, C. (2021). Government faces legal action over £23m deal involving patient data. BMJ, 372. doi:10.1136/bmj.n587

Earl, S., Currie, M., Vidmar, M., & Gorton, V. (2021). Public Sector Personal Data Sharing. (Scottish Government commissioned literature review.)

Enough! Collective. (2022). Less: A Journal of Degrowth in Scotland. Issue 4, Summer 2022. Retrieved from https://www.enough.scot/wp-content/uploads/2022/12/LESS4.pdf

Equality and Human Rights Commission (2016). Assessing impact and the Public Sector Equality Duty: A guide for public authorities in Scotland. Retrieved from https://www.equalityhumanrights.com/sites/default/files/assessing-impact-public-sectory-equality-duty-scotland.pdf

Erikainen, S. & Cunningham-Burley, S. (2021). Unlocking the Value of Scotland's Data: Public Engagement Around the Access to Public Sector Data With or By Private Sector Organisations. (Scottish Government commissioned literature review.)

Eubanks, V. (2018). Automating Inequality: How High-Tech Tools Profile, Police and Punish the Poor. New York: St Martin's Press.

Goldacre, B., & MacKenna, B. (2020). The NHS deserves better use of hospital medicines data. BMJ, 370. doi:10.1136/bmj.m2607

Hartman, T., Kennedy, H., Steedman, R., & Jones, R. (2020). Public perceptions of good data management: Findings from a UK-based survey. Big Data & Society, 7(1). doi:10.1177/2053951720935616

Harvey K, & Laurie G. (2021). Concept Note: Public Interest. Retrieved from https://www.law.ed.ac.uk/sites/default/files/2021-03/Public%20interest%20concept%20note.pdf

Hopkins Van Mil. (2021). Putting Good into Practice: A Public Dialogue on Making Public Benefit Assessments When Using Health and Care Data. (National Data Guardian research report). Retrieved from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/977737/PGiP_Report_FINAL_1304.pdf

Iliadis, A., & Acker, A. (2022). The seer and the seen: Surveying Palantir's surveillance platform. The Information Society, 38(5), 334-363. doi:10.1080/01972243.2022.2100851

Ipsos MORI. (2017). The One-Way Mirror: Public attitudes to commercial access to health data. (Report prepared for the Wellcome Trust). Retrieved from https://wellcome.figshare.com/articles/journal_contribution/The_One-Way_Mirror_Public_attitudes_to_commercial_access_to_health_data/5616448/1

Jefferson, E., et al. (2022). GRAIMATTER Green Paper: Recommendations for disclosure control of trained Machine Learning (ML) models from Trusted Research Environments (TREs). doi:10.5281/zenodo.7089491

Jones, K., Laurie, G., Stevens, L., Dobbs, C., Ford, D. & Lea, N. (2017). The other side of the coin: harm due to the non-use of health-related data. International Journal of Population Data Science 1(1.035) Proceedings of the IPDLN Conference (August 2016). doi:10.23889/ijpds.v1i1.52

Kallis, G., Kostakis, V., Lange, S., Muraca, B., Paulson, S., & Schmelzer, M. (2018). Research on degrowth. Annual review of environment and resources, 43, 291-316. doi:10.1146/annurev-environ-102017-025941

Keenan, B. (2022), The Evolution Of Elucidation: The Snowden Cases Before The Investigatory Powers Tribunal. The Modern Law Review, 85: 906-937. doi:10.1111/1468-2230.12713

Klinge, T. J., Hendrikse, R., Fernandez, R., & Adriaans, I. (2023). Augmenting digital monopolies: A corporate financialization perspective on the rise of Big Tech. Competition & Change, 27(2), 332–353. doi:10.1177/10245294221105573

Kukutai, T., & Taylor, J. (Eds). (2016). Indigenous Data Sovereignty: Towards an Agenda. Canberra: ANU Press.

Kuntsman, A., & Miyake, E. (2022). Paradoxes of Digital Disengagement: In Search of the Opt-Out Button. London: University of Westminster Press.

Life Sciences in Scotland Industry Leadership Group Digital & Data Subgroup. (2021). Opportunities and Priorities. Retrieved from https://www.evaluationsonline.org.uk/evaluations/Documents.do?action=download&

Lucas, J. C., Schroeder, D., Arnason, G., Andanda, P., Kimani, J., Fournier, V., & Krishnamurthy, M. (2013). Donating human samples: who benefits? Cases from Iceland, Kenya and Indonesia. In D. Schroeder & J. Cook Lewis (Eds.), Benefit sharing: From Biodiversity to Human Genetics (pp. 95-127) Dordrecht: Springer.

Murgia, M., & Harlow, M. (2021, July 27). NHS Shares English Hospital Data with Dozens of Companies. Financial Times. Retrieved from https://www.ft.com/content/6f9f6f1f-e2d1-4646-b5ec-7d704e45149e

Nanda, A. & Narayan, V. (2022). Data stewardship for responsible sharing of public data – an analysis of stewardship models for better urban governance. doi:10.5281/zenodo.7396011

National Data Guardian. (2022). What do we mean by public benefit? Evaluating public benefit when health and adult social care data is used for purposes beyond individual care. Retrieved from https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/1124013/NDG_public_benefit_guidance_v1.0_-_14.12.22.pdf

O'Keefe, K. & O'Brien, D. (2018). Ethical Data and Information Management: Concepts, Tools and Methods. London: Kogan Page.

O'Neil, C. (2017) Weapons of Math Destruction: How Big Data Increases Inequality and Threatens Democracy. UK, USA, Canada: Penguin Books.

Papageorgiou, V., Wharton-Smith, A., Campos-Matos, I., et al. (2020). Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England. BMJ Open, 10 (e033202). doi:10.1136/bmjopen-2019-033202

Pasquale, F. (2013). Grand Bargains for Big Data: The Emerging Law of Health Information. Maryland Law Review, 72, 682 . Retrieved from http://digitalcommons.law.umaryland.edu/mlr/vol72/iss3/2

Powles, J., & Hodson, H. (2017) Google DeepMind and healthcare in an age of algorithms. Health and Technology, 7, 351–367. doi:10.1007/s12553-017-0179-1

Salisbury, H. (2023). Doubts about a database. BMJ, 380. doi:10.1136/bmj.p292

Scassa, T., & Vilain, M. (2019). Governing Smart Data in the Public Interest: Lessons from Ontario's Smart Metering Entity. CIGI Papers No. 221. Retrieved from https://www.cigionline.org/static/documents/documents/Paper%20no.221_1.pdf

Scassa, T. (2020). Designing Data Governance for Data Sharing: Lessons from Sidewalk Toronto. Technology and Regulation 44-56. Retrieved from https://techreg.org/article/download/10994/11968

Scottish Government & COSLA. (2023). Greater access, better insight, improved outcomes: a strategy for data-driven care in the digital age. Retrieved from https://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2023/02/data-strategy-health-social-care-2/documents/greater-access-better-insight-improved-outcomes-strategy-data-driven-care-digital-age/greater-access-better-insight-improved-outcomes-strategy-data-driven-care-digital-age/govscot%3Adocument/greater-access-better-insight-improved-outcomes-strategy-data-driven-care-digital-age.pdf

Scottish Government. (2021). Scotland's AI Strategy: Trustworthy, Ethical and Inclusive. Retrieved from https://static1.squarespace.com/static/62cd519a0b49ae6dcee5dc8c/t/62d80552ad77dc084206e679/1658324316824/Scotlands_AI_Strategy_Web_updated_single_page_aps.pdf

Scottish Government. (2021). A Changing Nation: How Scotland will Thrive in a Digital World. Retrieved from https://www.gov.scot/binaries/content/documents/govscot/publications/strategy-plan/2021/03/a-changing-nation-how-scotland-will-thrive-in-a-digital-world/documents/a-changing-nation-pdf-version/a-changing-nation-pdf-version/govscot%3Adocument/DigiStrategy.FINAL.APR21.pdf

Scottish Government. (2021). An Ethics Framework for the Data and Intelligence Network. Retrieved from https://www.gov.scot/binaries/content/documents/govscot/publications/factsheet/2021/09/ethics-framework-data-intelligence-network/documents/ethics-framework-data-intelligence-network/ethics-framework-data-intelligence-network/govscot%3Adocument/ethics-framework-data-intelligence-network.pdf

Scottish Government. (2021). Review of the Information Governance Landscape across Health and Social Care in Scotland. Retrieved from https://www.gov.scot/binaries/content/documents/govscot/publications/consultation-analysis/2022/04/information-governance-review-executive-summary/documents/information-governance-review-executive-summary-review-information-governance-landscape-health-social-care-scotland/information-governance-review-executive-summary-review-information-governance-landscape-health-social-care-scotland/govscot%3Adocument/information-governance-review-executive-summary-review-information-governance-landscape-health-social-care-scotland.pdf

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Sorbie, A. (2022). Operationalising 'publicness' in data-intensive health research regulation: an examination of the public interest as a regulatory device. Edinburgh Research Archive, University of Edinburgh.

Sorbie, A. (2021). The Public Interest. In G. Laurie, E. Dove, A. Ganguli-Mitra, C. McMillan, E. Postan, N. Sethi, et al. (Eds.), The Cambridge Handbook of Health Research Regulation (Cambridge Law Handbooks, pp. 65-72). Cambridge: Cambridge University Press. doi:10.1017/9781108620024.009

Sorbie, A. (2020). Sharing confidential health data for research purposes in the UK: where are 'publics' in the public interest?. Evidence & Policy, 16(2), 249-265. doi:10.1332/174426419X15578209726839

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Stevens, L., & Laurie, G. (2017). From a culture of caution to a culture of confidence: facilitating the good governance of administrative data in the UK. International Journal of Population Data Science, 1 (1:358) Proceedings of the IPDLN Conference (August 2016). doi:10.23889/ijpds.v1i1.380ezEmmanuel etouzé

Tetley-Brown, L., & Klein, E. (2021). Exploring data-in-use: the value of data for Local Government/Data-in-Use: Der Wert von Daten für die Kommunalverwaltung. dms–der moderne staat–Zeitschrift für Public Policy, Recht und Management, 14(1), 11-12. doi:10.3224/dms.v14i1.07

Van Dijck, J., Poell, T., & de Waal, M. (2018). The platform society: Public Values in a Connective World. New York: Oxford University Press.

Waterman, L. Z., Pillay, M., & Katona, C. (2021). Sharing health data for immigration control affects marginalised communities. BMJ, 373. doi:10.1136/bmj.n1042

Watt, I. (2022). What is open data and why does it matter? The David Hume Institute in partnership with Open Data Scotland. Retrieved from https://static1.squarespace.com/static/59b82ed532601e01a494df34/t/621f59b041e2b77397a61b42/1646221746023/20200126_What+is+open+data+and+why+does+it+matter%3F.pdf


Email: christopher.bergin@gov.scot

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