Public dialogue on the use of data by the public sector in Scotland

Footnotes

1 Link to Scottish Government report: A changing nation: how Scotland will thrive in a digital world (2021)

2 The Data Intelligence Network was the collective name for a network of around 300 organisations, the majority of whom were in the public sector. The DIN team involved a core group of people who delivered services for the Network and Scottish Government employees.

3 Inclusion of the word ‘solely’ was not agreed upon by all participants in the final ratification of these guidelines, but rather reflects general discussions around the involvement of the private sector in using data about citizens. This explained in more detail in the “deliberative journey” chapter.

5 Link to Scottish Government report: A changing nation: how Scotland will thrive in a digital world (2021)

6 Aitken, Mhairi, Mary P. Tully, Carol Porteous, Simon Denegri, Sarah Cunningham-Burley, Natalie Banner, Corri Black, et al. 2019. ‘Consensus Statement on Public Involvement and Engagement with Data-Intensive Health Research’. International Journal of Population Data Science 4 (1). https://doi.org/10.23889/ijpds.v4i1.586

7 This objective was set at the beginning of the process, but the nature of the Network membership (consisting of over 300 organisations) meant that it was not practical to engage widely across the Network on the design of this public dialogue. However, Network members were involved in the project team and the Oversight Group, contributing to review of discussion guides and stimulus materials and delivered presentations to the panel.

8 A rapid evidence review was conducted to inform the design of this public dialogue. This review synthesised the published results of public engagement work from 2011 onwards that focussed on the use of data.

9 https://sciencewise.org.uk/about-sciencewise/our-guiding-principles/

10 A smaller group of participants met for an additional two workshops to explore the use of data by private and third sector organisations and the idea of benefit sharing (the findings of which can be found in a separate report).

11 Link to the Sortition Foundation website: How to run a citizen’s assembly

12 Link to BBC News webpage: Facebook-Cambridge Analytica Scandal

13 Link to the Data and Intelligence Network Ethics Framework: An Ethics Framework for the Data and Intelligence Network

14 Link to Legislation.gov website: The Health Protection (Coronavirus) Regulations 2020

15 Aitken, McAteer, Davidson, Frostick, and Cunningham-Burley. 2018. ‘Public Preferences Regarding Data Linkage for Health Research: A Discrete Choice Experiment’. International Journal of Population Data Science 3 (1): 429. https://doi.org/10.23889/ijpds.v3i1.429.

16 Aitken, Cunningham-Burley, and Pagliari. 2016. ‘Moving from Trust to Trustworthiness: Experiences of Public Engagement in the Scottish Health Informatics Programme’. Science & Public Policy 43 (5): 713–23. https://doi.org/10.1093/scipol/scv075

17 Davidson, Sara, Christopher Mclean, Steven Treanor, Mhairi Aitken, Sarah Cunningham-Burley, Graeme Laurie, Claudia Pagliari, and Nayha Sethi. 2013. ‘Public Acceptability of Data Sharing Between the Public, Private and Third Sectors for Research Purposes’. Gov.Scot. 2013. http://www.gov.scot/publications/public-acceptability-data-sharing-between-public-private-third-sectors-research-purposes/

18 Ipsos. 2022. ‘Public Perspectives on Access to Health Data by Non-Traditional Researchers: Findings from Deliberative Workshops’. IPSOS Scotland. Accessed 14 September 2022. file:///Users/jamiewebb/Library/Mobile%20Documents/com~apple~CloudDocs/Public%20deliberations%20on%20access%20to%20health%20data%20by%20non-traditional%20researchers.pdf