Surveys, social licence and the Integrated Data Infrastructure

Pauline Gulliver, Monique Jonas, Janet Fanslow, Tracey McIntosh, Debbie Waayer

Abstract


INTRODUCTION: Statistics New Zealand’s Integrated Data Infrastructure (IDI) is a central repository for researchers to access multiple government agency datasets. The aim of this investigation was to understand social licence for including survey data in the IDI.

METHODS: Two convenience samples were recruited: (1) participants in one of 10 focus groups; and (2) respondents to pilot surveys for the 2018 NZ census or a population-based survey on violence experience. Qualitative data were transcribed and analysed using thematic analysis. Analyses were conducted independently by two members of the research team and results compared.

FINDINGS: Whilst little prior awareness of the IDI existed, participants developed considered judgements about it, identifying concerns and proposing safeguards that would encourage them to support its maintenance and use.

CONCLUSIONS: While there is the potential for social licence to be granted for the IDI, an on-going, transparent engagement process is required to maintain trust with agencies and researchers. As an over-represented population within government agency data, active, honest engagement is required with Māori, as are safeguards to reduce risks of further stigmatisation and marginalisation.


Keywords


Big data; Social licence; Indigenous data; Policy development

Full Text:

PDF

References


Aitken, M., de St Jorre, J., Pagliari, C., Jepson, R., & Cunningham-Burley, S. (2016). Public responses to the sharing and linkage of health data for research purposes: A systematic review and thematic synthesis of qualitative studies. BMC Medical Ethics, 17(73). doi:10.1186/s12910-016-0153-x

Benn, S. I. (1984). Privacy freedom and respect for persons. In F. Shoemann (Ed.), Philosophical dimensions of privacy: An anthology (pp. 223–244). Cambridge, UK: Cambridge University Press.

Boutilier, R., & Thomson, I. (2011). Measuring and modelling the social licence to operate: Fruits of a dialogue between theory and practice. Retrieved from https://socialicense.com/publications.html

Butler, J., & Cantrell, R. (1984). A behavioural decision theory approach to modelling dyadic trust in superiors and subordinates. Psychological Reports, 55, 19–28.

Carter, P., Laurie, G. T., & Dixon-Woods, M. (2014). The social licence for research: Why care.data ran into trouble. Journal of Medical Ethics, 41(5), 404–409. doi:10.1136/medethics-2014-102374

Casanovas, P., De Koker, L., Meddelson, D., & Watts, D. (2017). Regulation of big data: Perspectives on strategy, policy, law and privacy. Health and Technology, 1–15. doi:10.1007/s12553-017-0190-6

Cram, F., Gulliver, P., Wilson, M., & Ota, R. (2015). Understanding over-representation of indigenous children in child welfare data: An application of the Drake risk and bias models. Child Maltreatment, 20(3), 170–182.

Curran, C., & Shaw, J. (2018). Government to undertake urgent algorithm stocktake [Press release]. Retrieved from https://www.beehive.govt.nz/release/government-undertake-urgent-algorithm-stocktake

Daas, P. J. H., Ossen, S. J. L., & Tennekes, M. (2010). Determination of administrative data quality: Recent results and new developments. Retrieved from Heerlen, The Netherlands http://pietdaas.nl/beta/pubs/pubs/Q2010_Session34_paper.pdf

Data Futures Partnership. (2016). Exploring social licence. Retrieved from datafutures.co.nz/assets/Uploads/DFP-Engagement-doc-FINAL.pdf

Dudley-Nicholson, J. (2016, August 11). Census 2016: Australia has become a global joke. The Daily Telegraph. Retrieved from http://www.dailytelegraph.com.au/rendezview/census-2016-australia-has-become-a-global-joke/news-story/0491d8ffd72da480da27483c39e5043b,

Edwards, D. (2016). Review of finding systems for early learning and schooling: Predictive modelling of risk of underachievement. Retrieved from https://education.govt.nz/assets/Documents/Ministry/Information-releases/All-for-release.pdf

Farr Institute. (n.d.) Public panels. Retrieved from http://www.farrinstitute.org/public-engagement-involvement/public-panels

Fried, C. (1968). Privacy. Yale Law Review, 77, 475–493.

Gulliver, P., Cryer, C., & Langley, J. (2013). Monitoring trends in violence: A delayed response to Estrada (2006). Journal of Interpersonal Violence, 28(16), 3129–3148.

Hall, N., Lacey, J., Carr-Cornish, S., & Dowd, A. (2015). Social licence to operate: Understanding how a concept has been translated into practice in energy industries. Journal of Cleaner Production, 86, 301–310.

Hallborg, R. (1986). Principles of liberty and the right to privacy. Law and Philosophy, 5, 175–218.

Harris, P. A., Taylor, R., Thielke, R., Payne, J., Gonzalez, J., & Conde, J. G. (2009). Research electronic data capture (REDCap) – A metadata-driven methodology and workflow process for providing translational research informatics support. Journal of Biomedical Informatics, 42(2), 377–381.

Harris, R., Tobias, M., Jeffreys, M., Waldegrave, K., Karlsen, S., & Nazroo, J. (2006). Effects of self-reported racial discrimination and deprivation on Maori health and inequalities in New Zealand: Cross-sectional study. The Lancet, 367(9527), 2005–2009.

Health and Disability Ethics Committee. (2014). Standard operating procedures for health and disability ethics committees. Retrieved from http://www.ethics.health.govt.nz

Heikkinen, H., Lepy, E., Sarkki, S., & Komu, T. (2016). Challenges in acquiring a social licence to mine in the globalising Arctic. Polar Record, 52(265), 399–411.

Holman, C. D. J., Bass, J. A., Rosman, D. L., Smith, M. B., Semmens, J. B., Glasson, E. J., . . . Stanley, F. J. (2008). A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system. Australian Health Review, 32(4), 766–777.

Hudson, M. (2016). Social licence: A Maori's perspective. Retrieved from https://static1.squarespace.com/static/58e9b10f9de4bb8d1fb5ebbc/t/591304ea414fb570382a3c1e/1494418668414/Social+license.pdf, 18 June 2018

Hughes, E. C. (1958). Men and their work. Glencoe, IL: Free Press.

Jansen, H. A. F. M. (2012, September Prevalence surveys on violence against women. Challenges around indicators, data collection and use. Paper presented at the Expert Group Meeting: Prevention of violence against women and girls, Bangkok, Thailand.

Jones, C. P. (2001). Invited commentary: “Race”, racism, and the practice of epidemiology. American Journal of Epidemiology, 154(4), 299–304.

Kirk, S. (2016, 18 October). Government cuts 5000 children from Growing Up in NZ longitudinal study. Stuff. Retrieved from http://www.stuff.co.nz/science/85464263/Government-cuts-5000-children-from-Growing-up-in-NZ-longitudinal-study,

Kukutai, T. (2011). Contemporary issues in Maori demography. In T. McIntosh & M. Mulholland (Eds.), Maori and social issues (pp. 11–48). Wellington, NZ: Huia.

Kukutai, T., & Taylor, J. (Eds.). (2016). Indigenous data sovereignty. Toward an agenda. Canberra, ACT: Australian National University.

Malin, B., Karp, D., & Scheuermann, R. H. (2015). Technical and policy approaches to balancing patient privacy and data sharing in clinical and translational research. Journal of Investigative Medicine, 58(1). doi:10.2310/JIM.0b013e3181c9b2ea

Mansell, J., Ota, R., Erasmus, R., & Marks, K. (2011). Reframing child protection: A response to a constant crisis of confidence in child protection. Children and Youth Services Review, 33(11), 2076-2086.

Mayer, R., Davis, J., & Schoorman, F. (1995). An integrative model of organisational trust. Academic Management Review, 20(3), 709–734.

McIntosh, T. K. (2011). Maori and cross-cultural research: Criticality, ethicality and generosity [Special issue]. New Zealand Sociology, 26, 61–75.

McIntosh, T. K., & Coster, S. (2017). Indigenous insider knowledge and prison identity. Counterfutures, 3, 69–99.

Mollering, G. (2006). Trust: Reason, routine, reflexivity. Oxford, UK: Elsevier Press.

NHS National Services Scotland. (2016). SPIRE: Your questions answered. Retrieved from http://spire.scot/your-questions-answered/

Presser, L., Hruskova, M., Rowbottom, H., & Kancir, J. (2015). Care.data and access to UK health records: Patient privacy and public trust. Technology Science, 2015081103, 1–35.

Privacy Act, New Zealand Government, Pub. L. No. 28 (1993 1 July 1993).

Prno, J. (2013). An analysis of factors leading to the establishment of a social licence to operate in the mining industry. Resources Policy, 38, 577–590.

Rockhill, B., Kawachi, I., & Colditz, G. A. (2000). Individual risk prediction and population-wide disease prevention. Epidemiological Reviews, 22(1), 176–180.

Rooney, D., Leach, J., & Ashworth, P. (2014). Doing the social in social licence. Social Epistemology, 28(3–4), 209–218.

Rousseau, D., Sitkin, S., Burt, R., & Camerer, C. (1998). Not so different after all: A cross-discipline view of trust. Academic Management Review, 23(3), 393–404.

Sanderson, I. (2002). Evaluation, policy learning and evidence-based policy making. Public Administration, 80(1), 1–22.

Shaw, D. (2014). Care.data, consent and confidentiality. Lancet, 383(April 5), 1205.

Social Investment Agency. (2018). How do we invest for social wellbeing? Retrieved from https://sia.govt.nz/about-us/what-is-social-investment/, 13 June 2018

Solove, D. (2007). I've got nothing to hide and other misunderstandings of privacy. San Diego Law Review, 44, 745–772.

Statistics New Zealand. (2017a). How we keep IDI data safe. Retrieved from http://www.stats.govt.nz/browse_for_stats/snapshots-of-nz/integrated-data-infrastructure/keep-data-safe.aspx#safes

Statistics New Zealand. (2017b). International data lab approved in Sydney. Retrieved from http://www.stats.govt.nz/tools_and_services/media-centre/media-releases-2017/stats-opens-int-data-lab.aspx

Statistics New Zealand. (2017c). Who we are. Retrieved from http://www.stats.govt.nz/about_us/who-we-are.aspx

Sterne, J. A. C., White, I. R., Carlin, J. B., Spratt, M., Royston, P., Kenward, M. G., . . . Carpenter, J. R. (2009). Multiple imputation for missing data in epidemiological and clinical research: potential and pitfalls. British Medical Journal, 338, b2393. doi:https://doi.org/10.1136/bmj.b2393

Taylor, M. C. (2011). Health research, data protection and the public interest in notification. Medical Law Review, 19, 267–303.

Tuari, J. (2014). Resisting condescending research ethics in Aotearoa New Zealand. AlterNative: A Journal of Indigenous Peoples, 10(2), 134–150.

van Staa, T.-P., Goldacre, B., Buchan, I., & Smeeth, L. (2016). Big health data: The need to earn public trust. British Medical Journal, 354. doi:10.1136/bmj.i3636

Walter, M. (2016). Data politics and Indigenous representation in Australian statistics. In T. Kukutai & J. Taylor (Eds.), Indigenous data sovereignty: Toward an agenda. Canberra, ACT: Australian National University.




DOI: http://dx.doi.org/10.11157/anzswj-vol30iss3id481

Refbacks

  • There are currently no refbacks.




Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.