Members

Professor David Hand (Chair)

Sam Cannicott

Colin Godbold

Emma Gordon

Roger Halliday

Reema Patel

Emma Rourke

Professor Donald Simeon

UK Statistics Authority

Alice Toms

Daniel Towler (for item 4)

Emma Walker

Simon Whitworth

1.Welcome and Introductions

1.1. The Chair welcomed the members to the first meeting of the Centre for Applied Data Ethics Advisory Committee.

1.2. Members were thanked for agreeing to be part of the committee and invited to briefly introduce themselves to the rest of the committee.

1.3. Each member provided a brief introduction of their professional background to the committee.

2.Terms of Reference

2.1. Emma Walker, operational lead at the UK Statistics Authority’s Centre for Applied Data Ethics, presented the draft Centre for Applied Data Ethics Advisory Committee Terms of Reference. Members were reminded that meetings would take place quarterly. These meetings will provide the Centre for Applied Data Ethics with independent and expert advice on key data ethics issues; identify areas that would benefit from further guidance and support and; provide feedback on various guidance, outputs and activities of the Centre.

2.2. Committee members were reminded that minutes would be circulated after each meeting, and that both minutes and agendas will be openly published on the UK Statistics Authority’s website.

2.3. The committee raised the following points in the discussion that followed:

• There was agreement that the Centre should focus on the research and statistical context, but that guidance should be adoptable by other sectors.
• In reference to point 11 in the Terms of Reference, the committee requested clarification on how the CADEAC will review the effectiveness of its meetings, how we can measure the impact of the Centre and what the expectations are for committee members to communicate the work of the committee to others.
• The committee identified that it would be useful to discuss metrics for measuring impact in a future meeting.

2.4. The committee agreed the draft Terms of Reference subject to the points in section 2.3 being addressed.

ACTION: Secretariat to expand Point 11 of Terms of Reference to cover how the effectiveness of the Committee will be assessed and circulate revised version.

ACTION: Centre to develop a paper on impact metrics to discuss at the next meeting.

3. Centre Strategy

3.1. Emma Walker presented the committee with an overview of the Centre for Applied Data Ethics strategy, which is openly available on the Centre webpages. This includes the focus on providing applied, practical data ethics guidance, advice and support to the research and statistical community, an emphasis on engagement and collaboration in the work of the Centre, and links with the wider UK Statistics Authority Five-Year Strategy. Emma cited plans to develop an ethics support service for researchers and statisticians and communicated the need for materials to be made publicly available, with consideration of internal and external needs.

3.2. The Committee acknowledge the importance of focusing on applied data ethics and welcomed this work. The discussion raised the following points:

• The Centre’s strategy was perceived to be exciting and ambitious and the committee suggested collaborating with other organisations where appropriate. The committee heard that the Centre Strategy has received positive feedback from external organisations who would like to collaborate with the Centre. The committee agreed that it was important for the Centre for Applied Data Ethics to work with those for whom the guidance is intended to help.
• The committee discussed who the main users of the service would be and recommended that work produced by the Centre should support those who are not just using data, but collecting, managing, and owning data as well.
• The committee felt, in reference to the point above, that it would be important for the Centre to ensure that the work presented was very clear in communicating its scope, and who it was hoped would benefit.
• The committee suggested that it would be beneficial to develop a stakeholder engagement strategy in order to ensure that the guidance reaches its target audience(s) and maximises collaboration opportunities. The Committee requested that this is discussed at a future meeting.
• The committee discussed the complex relationship between the data ethics and medical ethics approval processes. It was suggested that guidance to help analysts navigate these complexities could be useful.
• The committee noted that other organisations also look at ethical issues, and provide ethical frameworks for researchers and statisticians, and that it is important the Centre collaborates with these groups to ensure that nothing is falling between the gaps.

ACTION: The Centre to develop an engagement strategy for discussion at the next meeting, with consideration of the points made during the discussion.

4. Our Current Ethics Service Offering

4.1. Daniel Towler, from the UK Statistics Authority’s Data Ethics User Support team, presented the committee with a summary of the current ethics service offering provided by the data ethics team, including the work of the National Statisticians Data Ethics Advisory Committee, the UKSA ethical principles, the ethics self-assessment tool, and plans for the further development of these tools and guidance in partnership with the Centre.

4.2. The following points were raised in the discussion:

• The Committee provided positive feedback, particularly in relation to the ethics self-assessment tool.
• A user review of the tool has just been completed, which asked users whether they found the tool helpful and how it can be improved. The data ethics team is currently in the process of analysing these results, and feedback will be used to further develop the tool. The committee agreed that an iterative process of feedback and development would be beneficial. The results of this will be shared with the committee at a future meeting.
• The committee discussed who was considered a researcher or statistician and were encouraged that this included data scientists and analysts who are working in relevant areas.
• It was suggested that there are varying levels of ethical understanding and training between different research groups, and that it will be beneficial for the data ethics team to ensure that this work is communicated to all researchers to whom it is relevant, and that the language used in outputs reaches those diverse audiences.
• It was acknowledged that this is a very complex space, with different organisations working on relevant material, and several different ethical frameworks existing alongside each other. The committee felt that it would be important to work with other organisations to assure outputs are aligned when appropriate.
• It is important that researchers are not only led to an ethical framework, but that they are supported in both using the tool and understanding its framework. The committee was encouraged by the existence of the UK Statistics Authority data ethics user support team, which was seen to be valuable in helping to apply ethical principles to real life research.
• The NSDEC will continue to provide appropriate independent ethical advice and assurance to the research and statistical community. Feedback from NSDEC has been that the ethics tool and associated activities have been very useful for the research community in providing a roadmap to identify potentially ethically risky projects, and help researchers navigate these challenges.
• The committee discussed the value of the assessment tool at different stages of a research project. It was agreed that the tool would have most value to researchers when used as early in the research process as possible.

5. Centre Landscape Review and Potential Guidance Topic Areas

5.1. Emma Walker presented an overview of the recently released Centre landscape review, which covers applied data ethics guidance and activities currently available and undertaken within the UK. This review is openly available on the Centre webpages and positions the Centre within the wider data ethics landscape.

5.2. The landscape review also provides an initial list of proposed topic areas that may benefit from the development of applied ethics guidance and support within the research and statistical context.

5.3. Emma requested the Committee’s views on which items they felt should be prioritised by the Centre for Applied Data Ethics with regards to the production and publication of guidance.

5.4. The Chair invited the committee to send further comments to Emma Walker regarding Annex B of the landscape review via email.

5.5. The discussion raised the following points:

• The Committee had varying opinions on how researchers and statisticians use algorithms in transparent ways. It was suggested that algorithms may be seen as opaque to a lay viewer, and so transparency may be difficult. The committee pointed the Centre to ICO draft guidance which sets out a requirement to publish a clear description of how an AI algorithm works.
• The committee discussed how the impact of the health system working at pace due to Covid-19 may influence ethical considerations. It was felt that this may influence the priorities of the Centre, and proposed guidance topic areas.
• The committee felt that some of these areas had been discussed by other organisations, and that it was important to consider what other organisations are working on in order to avoid the duplication of work.
• The committee suggested that it would be beneficial to the Centre to look at areas of transparency, public good and inclusivity as cross-cutting themes.
• The committee discussed the challenges of differentiating between research and operational uses of data and felt it important that this was considered when collating further guidance.

ACTION: Committee Members to send Emma Walker discussion points on Annexe B.

6. High-level Initial Centre Workplan

6.1. Emma Walker presented a summary of the proposed Centre workplan for the next 3-6-month period. This includes plans for a virtual roundtable in May, an international survey and related work, and plans for guidance related to: ethical use of geospatial data, ethical use of predictive modelling, considering privacy, and maximising public good, within the research and statistical context. Current plans for the Centre include:

• An open draft piece on geo-location data to be published in the next 2-3 weeks. Once published, the Centre will be asking for feedback and comments from the wider community and invited the committee to provide comments once published.
• A roundtable event is being held on the 12^th May which will encourage discussion surrounding how we can address the biggest emerging ethical challenges in research and statistics, and how we can practically do something about them.
• The Centre hopes to develop an international workstream. A survey was sent to other international NSI’s in order to identify possible collaborators, and the data from this is now being reviewed.

6.2. The Committee were invited to discuss the workplan, and areas that they felt were particularly important to focus on. The discussion raised the following points:

• The Committee felt that when looking at predictive modelling, it is particularly important to consider the objective function of the research, and that researchers should spend time considering the ethical implications of what they want to do.
• The Committee recommended that the topics of privacy and public good should be considered in relation to one another and recognised a need to balance the implications of privacy with the potential for a research project to do public good. Members agreed that there was a need for guidance in this space which helps researchers understand how to balance these priorities.
• The Committee considered guidance which would be grounded in public attitudes as particularly beneficial, and welcome further public engagement around data privacy, equality, and transparency.

7. Any Other Business

7.1. The Chair thanked the committee for their involvement, and their contribution to the meeting.

7.2. The next meeting of the Centre for Applied Data Ethics Advisory Committee is on Thursday 8^th July 2021.

ACTION: The committee were invited to email any further contributions to the discussion should they wish to.