The minutes for each meeting of the Data Ethics Advisory Group, grouped by date, are summarised here.
Meeting summaries from 2019 to 2022
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Jonathan Godfrey, Jonathan Kilgour, Will Koning, Andrew Sporle, Frith Tweedie, Kate O’Connor, Russell Craig
Stats NZ Officials: Emma MacDonald, Director, Interim Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor, Stats NZ; Amelia Campbell, Principal Policy Advisor, Stats NZ; Fiona Sinclair, Senior Governance Advisor, Stats NZ.
Item One: Stats NZ
Item Two: Te Whatu Ora
The Chair welcomed members and officials, and the meeting was opened with karakia.
The minutes of the meeting held 23 November 2023 were approved. Members declared relevant interests, it was noted that Colin Simpson would step out for the Te Whatu Ora Item and Jonathan Godfrey would Chair for this portion of the meeting. Actions from the previous meeting were reviewed.
The Stats NZ team updated the Group on the response to their feedback. The feedback resulted in Stats NZ beginning to review the wider authorising environment, reviewing legislation, policy, and governance, along with international approaches relating to the use of administrative data. Privacy Impact Assessments are being planned for both the multi register integration and the development of an administrative population model prior to engagement with the Office of the Privacy Commissioner and wider engagement.
Engagement was briefly discussed, noting that those who are most impacted are those that Stats NZ most needs to hear from and where engagement effort should be targeted, rather than engaging with those who are ‘easy to find’. Officials noted that a written update would also be provided to members.
Stats NZ provided an overview to the paper provided and discussion was held with the members.
Engagement is not starting anew, and the team are building on the relationships and partnerships forged through the 2023 Census engagement. Relationships have also been developed through Stats NZ’s Māori Partnerships and Engagement Team, who partner with iwi and Māori to understand their data aspirations and needs.
The Stats NZ team are looking at this through a ‘trust and confidence’ lens and are seeking to find out about how people feel about the use of deidentified person-centred administrative data for official statistics and approved research.
A phased engagement is proposed with key groups. A whakapapa engagement approach with iwi and Māori is planned, including engagement with individual iwi and some collectives that were established as part of the 2023 Census. Phase one is underway and phase two will begin from April. The level of proposed public engagement is new for Stats NZ, where the intent is to engage with the public using a social media/online post-based engagement system, alongside face-to-face engagement with key population organisations and groups, and outreach in community centres / public spaces. Challenges in social media engagement have been recognised and identified.
Timelines were discussed noting that these are very short due to key decision points. A DEAG member noted that this makes the meaningful element of engagement difficult. Discussion was held on the engagement with priority populations, and the identified cohorts.
The Te Whatu Ora team introduced themselves and overviewed their reasoning for approaching the DEAG. Members noted their appreciation for the clear briefing paper provided.
The National Collections team at Te Whatu Ora has systems and processes in place for ensuring that the sharing of the National Collections data they hold is safe and legal. In sharing this with commercial entities there are additional areas regarding ethics and social license obligations to consider that they would like to discuss with the group. Following this meeting they will also being discussing this with the Data Council to hear their views.
Key areas of discussion with the group were:
Te Whatu Ora noted the challenges in resourcing and prioritising requests across the system, and the balancing act required. Additionally, many requests from private entities contain complex technical information. The use of the Health and Disability Ethics Committee (HDEC) as a source of approval for the sharing of information was discussed. The Group were unsure if this was appropriate, and Te Whatu Ora noted that they would approach HDEC with this conversation.
Commercial advantages were discussed, and the group advised that Te Whatu Ora may need to consider comparing providers to identify how they contribute to such things as equity, benefits, and relevance to the New Zealand health system. The importance of fostering local innovation and innovations that don't underserve New Zealanders by using overseas models and algorithms, was also highlighted.
The European Union and Scandinavian approaches to collaboration and cost recovery from researchers and corporate entities was discussed. Noting that cost recovery is a complex field within health, and barriers to individual researchers and smaller research groups could be created.
The Secretariat spoke to the paper provided within the meeting pack, with the proposed changes to the cadence of the Data Ethics Advisory Group.
The members agreed that moving to a monthly, but shorter meeting model was more sustainable and allowed for agencies to approach with items in a timelier manner.
Officials provided an update on engagement with the UK’s National Statistician’s Data Ethics Advisory Committee (NSDEAC) who are keen to engage with DEAG. A pre-recorded presentation has been provided to NSDEAC for their next meeting and in response they will present to a future DEAG meeting.
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Jonathan Godfrey, Will Koning, Andrew Sporle, Frith Tweedie, Kate O’Connor, Russell Craig, Jonathan Kilgour
Stats NZ Officials: Emma MacDonald, Director – Interim Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor, Stats NZ; Amelia Campbell, Principal Policy Advisor, Stats NZ; Fiona Sinclair, Senior Governance Advisor and Executive Services.
Topics One & Two: Stats NZ
Topic Three: Ministry of Housing and Urban Development
The Chair welcomed members and officials, and the meeting was opened with karakia.
The minutes of the meeting held 2 October 2023 were approved. Members declared relevant interests. The Secretariat work programme was noted and a discussion held on dates for the 2024 meetings.
A presentation on the Transformation Programme planned for Stats NZ was shared, noting an intention to test early ideas and ethical data innovation with the Data Ethics Advisory Group. The presentation addressed the drivers of transformation, including the changing data needs of New Zealand with a focus on timely, relevant, and granular data.
Feedback from the advisory group centred on:
The team was requested to consider the negative consequences of not operating within the right ethical and legal framework, such as data being used in ways that would lead to harm/s, or in ways that would extinguish rights, and express how they are addressing these.
References to equity and inclusion were discussed. A member recommended a focus on working with minorities, with a rationale that what works well for minority groups will work well for the majority of people. The reality of a digital divide was raised and the need for this to be considered. Māori Data Sovereignty needs were discussed, highlighting the importance of not losing ground on iwi data needs.
Advice was given to Stats NZ to take the best parts of traditional approaches that can serve the needs of Aotearoa alongside opening the door to new ways of working. Members identified that there is a need to make gains in the ways admin data can be used.
Members were updated on the work Stats NZ had undertaken following the advice received from the Group at the October meeting.
The Statistical Business and Location Registers are understood, and it is easy to see the utility of these. The proposed Administrative Population Model requires careful progression, guided by the authorising environment. Of particular concern to members is the need to establish social license through engagement. It will be difficult to continue to effectively produce official statistics and undertake research without understanding related public sentiment and addressing key concerns raised. Engagement is needed noting that linking people’s data is something that is routinely done and that it is a useful approach.
Stats NZ noted that the Administrative Population Model is still in the conception phase, and there is a spectrum of what Stats NZ could do and how they do it. A lot of discussion is occurring on what this looks like in practice, and how this could operate and what it means.
Recommendations were made by the group to continue to work on the paperwork and presentation of the registers, with respect to the language used and the setting of expectations on use.
There is a need to bring the public onboard before going too far with development.
The DEAG would like to be part of the ongoing journey of engagement.
The Ministry of Housing and Urban Development (HUD) provided a high-level summary of the Ethnicity and Housing Demand Modelling project. The project aims to understand where high-level housing demand is coming from in the medium to long term and model impacts of intervention. Currently the system is very reactive, and a more systemic shift is being sought. A microsimulation model was initially considered; however, the project has moved to a demand scenario model, using IDI data to create a simple, synthetic model of New Zealand.
HUD is looking to use ethnicity data in the model as housing outcomes for different ethnicities differ and there is a risk that not including this data will result in missed outcomes now and in the future. HUD is specifically seeking the members guidance on inclusion of ethnicity in the model.
Discussion was held on:
Discussion was held on the complexity of combining housing, ethnicity, age, and prioritisation within the model. A suggestion was made to run a stratified process, to understand was going on in a community, for that community - rather than needing to compare between communities.
A member recommended that once published, HUD could look at a piece of work being put together on COVID-19 Outcomes being produced by Nick Stynes. The COMPASS research group was also suggested as a potential connection, given their microsimulation work.
Discussion was held regarding the disability status of individuals, and the tendency to overlook this status rather than imperfectly looking at this, due to the reliability of the data. The disability survey might be another source of some external information that could be used, and a member suggested discussing this project with the Disability Data Evidence Advisory Group.
A member noted that if ethnicity was to be used in the model, then it needs to include a multitude of factors, otherwise ethnicity may end up being used as a poor proxy measure for geographical locations, income levels, education etc. HUD noted that the model does include income and education.
The approach and methodology of creating a synthetic dataset at an individual level was discussed and potential privacy issues were queried. HUD have advised after the meeting that they have not gone forward with utilizing synthetic data sets.
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Jonathan Godfrey, Will Koning, Andrew Sporle, Frith Tweedie, Kate O’Connor, Russell Craig
Stats NZ Officials: Emma MacDonald, Director – Interim Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor, Stats NZ; Amelia Campbell, Principal Policy Advisor, Stats NZ; Fiona Sinclair, Senior Governance Advisor and Executive Services.
Topic One: Stats NZ
The Chair welcomed members and officials, and the meeting was opened with karakia.
The minutes of the meeting held 22 August 2023 were approved. Members declared relevant interests.
The discussion at this meeting provided the background knowledge for the committee to understand the Integrated Statistical Data system work and how this can support Stats NZ’s ‘admin data first’ strategy.
The presentation covered the key topics of:
The Statistical Business Register and Statistical Location Register are currently in production and the team provided an overview of these. The Administrative Population Model is currently in the ideation phase and the team shared some initial thinking and questions for DEAG.
Key areas of discussion held during the meeting focused on:
The Data Ethics Advisory Group members thanked the Integrated Statistical Data System team for bringing this project to the group and noted that they will provide feedback, requesting that the team return to the group on 23 November 2023 to discuss this.
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Jonathan Godfrey, Jonathan Kilgour, Will Koning, Andrew Sporle, Frith Tweedie, Kate O’Connor
Stats NZ Officials: Fiona Sinclair, Senior Governance Advisor and Executive Services; Emma MacDonald, Interim Director – Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor, Stats NZ; Amelia Campbell, Principal Policy Advisor, Stats NZ.
Topic One: Stats NZ
Topic Two: System Leadership Group
Topic Three: Stats NZ
The Chair welcomed members and officials, and the meeting was opened with karakia.
The minutes of the meeting held 21 June 2023 were discussed. Noting updates to wording requested. NB: the June minutes were approved by the Chair post the meeting. Members declared relevant interests.
The Stats NZ team are seeking the group’s feedback on any ethical considerations with the options presented for filling in missing responses to the sex at birth and gender questions within Census 2023 that they may not have already considered.
Following a presentation from the team, Group members provided feedback focussed on:
The Chair noted that as the group is an advisory board, they cannot approve a specific approach or direction, however they hoped the team felt the opportunity to discuss this issue was helpful.
Emma MacDonald provided an introduction and background to the interim GenAI guidance that had been produced for use by Government agencies, by the Digital, Data and Information System Leaders Group. Advice was sought from DEAG on what potential updates need to be thought about for the future.
Key areas of discussion and feedback from the Group were:
Emma MacDonald provided an update on the Interim Centre for Data Ethics and Innovation (iCDEI); Cabinet has signed off on the interim structure and a soft launch will be held at the Aotearoa AI Summit in Auckland on 21 September.
The Centre is being established as an interim model. Next steps will be to begin the service design and engagement with experts and Māori, on what the enduring centre could look like. The Centre’s mandate is still an open conversation.
Development of the work programme for the first year is ongoing, establishing engagement models, working through engagement plans for individual Iwi, and identifying the wider network to support.
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Russell Craig, Jonathan Godfrey, Jonathan Kilgour, Will Koning; Andrew Sporle, Frith Tweedie
Stats NZ Officials: Caleb Johnstone, General Manager – Data System Policy; Emma MacDonald, Director – Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor – Data Services; Amelia Campbell, Principal Policy Advisor.
Secretariat: Fiona Sinclair, Governance and Executive Secretariat.
Item Three: Ministry of Business Innovation and Employment, Monika Ciolek Principal Policy Advisor, Rangiamohia Dansey–White, Policy Intern.
The Chair welcomed members and officials, and the meeting was opened with karakia.
The minutes of the meeting held 23 May 2023 were approved.
Members declared relevant interests.
Discussion was held on the Consumer Data Right work being undertaken by MBIE, and the draft bill.
MBIE discussed what data the work is focussed on. When a business provides goods and services about us, they also hold information on us. This will be made accessible and guides standard formats in which data will be exchanged on request, where the user is easily able to turn off access at any time. The intention is to create data as a resource for the customer, raising questions of are we happy to have this as an option? Are the settings of the current Privacy Act enough?
The draft bill does not contain enforcement powers, this will be worked through in the select committee process.
Ethics questions surround how this might be undertaken. The Privacy Act has some protections regarding personal information, should there be obligations on accredited requestors in relation to ethical use?, or at least transparency, on the de–identification of consumer data?
Initial work has been focused on the interaction of the bill with the Privacy Act. Transparency obligations are being included and it was noted that users will not be required to use this method of data sharing. Organisations will be required to publish what they will do with your data, not just what they will be doing for you.
Discussion was held on the limitations of the enforcement provisions in the current Privacy Act and what protections would be brought in with the new bill. MBIE advised that there will be enhanced requirements on consent, as well as additional privacy protections within the bill. Specifications of security standards during data exchange, identity verification before the exchange and a dashboard at both holder and user ends showing what permissions currently exist, are proposed.
There is no scope to amend the Privacy Act as part of this work. It was noted that the Privacy Commissioner and Ministry of Justice would need to consider this piece of work.
Data protection responsibilities and quality metrics were also discussed.
Discussion of Māori Data Governance and sovereignty movements and engagement on the bill were discussed with the members recommending using current existing Māori structures rather than establishing new ones would be beneficial. MBIE noted that they believe that the framework is relevant to all three articles of Te Tiriti, and they are working through how to strengthen this using the recently published Te Kāhui Raraunga Māori Data Governance Model.
The need for the crown to support enabling submissions to be completed was noted and a member provided examples of how this was completed through the Accessibility for New Zealanders Bill process. Further involvement than consultation was discussed as key to engagement, and members noted some avenues that may be options for MBIE to approach.
Emma MacDonald and Fiona Wharton held a workshop with the members of the group focussed on understanding what the group believed that the initial focus of the Centre for Data Ethics and innovation should be on its establishment.
Key themes from the workshop related to:
Focus areas for the Centre for Data Ethics and Innovation were proposed as:
Advisory Group: Professor Colin Simpson (Chair), Pieta Brown, Russell Craig, Jonathan Godfrey, Jonathan Kilgour, Will Koning; Kate O’Connor, Andrew Sporle, Frith Tweedie
Stats NZ Officials: Mark Sowden, Government Chief Data Steward and Chief Executive of Stats NZ; Caleb Johnstone, General Manager – Data System Policy; Emma MacDonald, Director – Centre for Data Ethics and Innovation, Stats NZ; Fiona Wharton, Principal Advisor – Data Services; Amelia Campbell, Principal Policy Advisor.
Secretariat: Fiona Sinclair, Governance and Executive Secretariat.
Item Four: Te Tari Taiwhenua – Department of Internal Affairs. Colin Holden, General Manager System Strategy and Initiatives; Tony Eyles, Executive Director Cloud Programme; Adrienne Moor, Lead Government Cloud Programme.
The Chair welcomed members and officials, and the meeting was opened with karakia.
The members of the group introduce themselves. New members to the group are Andrew Sporle, Jonathan Kilgour, Pieta Brown, Jonathan Godfrey, Russell Craig, and Frith Tweedie.
Mark Sowden as the Chief Executive of Stats NZ and the Government Chief Data Steward introduced himself and his goals for the Data Ethics Advisory Group.
The minutes of the meeting held 23 February 2023 were approved
Members declared relevant interests.
The Chair introduced previous case studies of items presented to the group for discussion.
Discussions were often more helpful if they were early in their establishment. The Group’s model of engagement has shifted to reflect this.
Discussions were more useful when there was a degree of preparation work was undertaken prior to agencies coming to the Group. In some instances, it was good to see that the privacy commissioner had been approached for advice and a privacy impact assessment completed. This allowed for good discussion to be held and substantial feedback provided.
Discussion was held regarding the need for the Group to not be a rubber stamp at the end of the project, and the preparation work required ahead of projects attending the group.
The long–term impacts of the Group’s advice were discussed and a need to ensure that there is follow up to see how agencies have used the Group’s advice.
Thematic points and principles could be taken from the Group’s consideration of different projects, and these could form the basis of advice released by the Centre for Data Ethics and Innovation (when established) for advice and guidance to be developed.
Options available for escalating where advice was not taken in by agencies were discussed. Noting that the group can bring this to the attention of the GCDS for discussion with Agencies. These could be incorporated in advice from the GCDS or the GCDS could raise the matter with relevant agencies if required.
Discussion was held regarding the amount of information that comes with the attendees that goes to the group, and it was noted that the secretariat works with the agencies to prepare them prior to attendance.
The Chair thanked the new members for their joining of the group.
Discussion was held regarding the next meeting to be held on 21 June 2023, and the need to potentially extend the meetings in timing now that the membership is re–established.
Advisory Group: Professor Colin Simpson (Chair), Kate O’Connor, Dr Will Koning.
Stats NZ Officials: Caleb Johnstone, General Manager – Data System Policy; Tennille Maxey, Manager – Data System Policy; Fiona Wharton, Principal Advisor – Data Services.
Secretariat: Fiona Sinclair, Governance and Executive Secretariat.
Item Four: Tahia Eaquab, Chief Data Steward; Louise Pirini, Manager Analytics; Tracey McFadyen, Data and Integration Architect. Social Wellbeing Agency
Item Five: Jade Mackay, Principal Analyst – Te Manatū Waka, Ministry of Transport.
The Chair welcomed members and officials to the meeting and a karakia given.
The minutes of the previous meeting were approved.
The action register was noted, and updates provided.
For the Social Wellbeing Agency discussion, the Chair noted a cross over with his role at Vic Uni and previous work with the Chief Data Steward. It was agreed that the members would lead the discussion and feedback on this item.
The new terms of reference were discussed and endorsed by the group members.
A proposed approach to recruiting new members was presented for discussion and endorsement by the members to go to the Government Chief Data Steward.
Officials from the Social Wellbeing Agency joined to discuss the MahiTahi Analytics Platform developed alongside Te Puni Kokiri and discuss what ethical oversight and processes may be needed around this shared analytics platform.
MahiTahi is an analytics platform developed by SWA in partnership with Te Puni Kokiri (TPK). As small agencies there is limited funding available for data analytics infrastructure and SWA is reliant on the Integrated Data Infrastructure (IDI) and associated service. However, it is not easy to integrate additional datasets to the IDI. MahiTahi allows public source data from different data sources and domains to be held on the one platform. Other agencies can bring in their own data sets to create time series and perform analysis.
The Committee’s queries to the project team focused on.
The Committee’s feedback centred on the need to establish a strong governance framework for the use of the platform. Similarities were noted to research ethics, with the ‘Growing up in New Zealand’ Study recommended as having a strong governance framework where the data is treated as taonga. SWA could look to replicate aspects of this framework.
The self–service aspect of the platform was discussed. A committee member noted that some data will need to be protected for specific use, while other data may be made accessible more readily i.e., different tiers of data. Differing levels of self–service will be needed as part of the governance framework and for specific use cases.
Discussion was held on ‘Project Monty’ – an agent–based transport model simulating a ‘day in the life’ of a New Zealander in the transport system, and how the concept of ‘fairness’ is estimated across government.
This simulation is used to predict the impact of interventions (i.e., policy changes). Impacts on different strata of society can be predicted, under different conditions. The simulation takes a significant time to run, and it is not practical to do this within the Integrated Data Service environment governed by Stats NZ.
Currently the model seeks to optimise utility for each individual. Discussion is emerging on whether an intervention is ‘fair’ on a strata of society.
Discussion was held on the estimation of fairness.
The Committee members noted that the primary research work being undertaken is going to be an experimental and iterative process, and continuous improvement will be based on this, ensuring that feedback loops are closed, and parameters are not missed. A Committee member noted that the New Zealand Centre for Sustainable Cities (Otago) has recently published a paper ‘Fairness in Transport Policy: A New Approach to Applying Distributive Justice Theories’ by Edward Randal that may be of interest to the Ministry. The Ministry may also find it helpful to draw on the Centre’s expertise.
The group discussed next steps and the meeting was closed with a karakia.