The NHS AI Lab, with the support of Sciencewise, has commissioned a public dialogue that will explore new approaches to data stewardship for artificial intelligence (AI) in healthcare. The dialogue will be delivered by a consortium, led by Ipsos in collaboration with Imperial College Health Partners and the Open Data Institute (ODI).
Data stewardship describes practices relating to the collection, management and use of data. There is a growing debate about what a ‘responsible’ approach to data stewardship entails, with some advocating for a more participatory approach. A participatory approach could mean involving people in the “design, development and deployment of data governance frameworks”, or with emerging technological advances like Personal Online Datastores, it could mean people governing data about themselves and making decisions (such as whom to share their data with and for what purposes) that they would typically entrust to third-parties. There are ethical considerations that need to be explored in relation to different models of data stewardship, as there will be trade-offs between enabling greater individual autonomy over data and delegating responsibility over data to third-party institutions.
This public dialogue is the first step in trialling a bottom-up approach to deciding priorities for investment that can further the Lab’s aim to strengthen the ethical assurance of AI-driven technologies in health and care. The participants in the dialogue will ultimately hone the remit of a research competition that the AI Ethics Initiative will hold in 2022 to improve data stewardship approaches in the NHS AI Lab and more broadly in the NHS. They will do this by informing the competition’s Terms of Reference (to be developed by the AI Ethics Initiative), which will include the aims, areas of focus and questions of interest.
The dialogue will engage 50 participants across a range of backgrounds as part of four deliberative workshops. Additionally, there will be two stakeholder workshops – the first to shape content for the dialogue, and the second to share actions and implications related to the findings.
Some of the questions explored as part of the public dialogue will include:
- What do participants see as the benefits and risks of delegated, collectivised and individualised data stewardship approaches?
- How do participants perceive the trade-offs between individual autonomy vs. collective gains across the different models of data stewardship?
- What is required for individuals to trust expert third-parties to make decisions about patient data and what is required for them to feel confident about making those decisions themselves?
- What is the level of participation in data stewardship that patients and the public believe should be offered (bearing in mind trade-offs)?
There will be an Oversight Group, chaired by Natalie Banner from Genomics England. For a full list of Oversight Group members and information about the dialogue, please see the AI Ethics Initiative website.
Image by Owen Beard on Unsplash