Deliberative workshops with public members: Establishing trust in the use of synthetic data [DELIMIT]
Lead Research Organisation:
CARDIFF UNIVERSITY
Department Name: School of Medicine
Abstract
Synthetic data (often referred to as 'mock' or 'dummy' data) is a term used to describe a new copy of a dataset. This dataset is created at random but replicates the structure and some of the patterns of the original 'real' data set and without the risks of identifying a specific individual. It can be used to explore the potential usefulness of a 'real' dataset and provide training in its use for those interested in accessing it for research purposes. Different types of synthetic data pose more risk to confidentiality than others depending on how closely they match the original dataset - "low-fidelity" refers to a lower risk. Data providers including NHS and other UK Government departments already make these datasets available. Despite recent work in this area to expand the use of synthetic data and encourage both researchers and data providers to utilise these datasets, there has been no consultation with the public.
Addressing project 3 of call brief, we propose a large public consultation to bring together a diverse group of the public to consider the following questions:
How much do you know already about synthetic data? And what are your questions now you know a bit more?
Do you have any concerns? What might allay them?
How can we explain the concept of synthetic data, its creation and use, in an accessible and useful way?
What should organisations such as data providers, funders and academics be doing to build and maintain public trust in the use of synthetic data?
We are partnering with an organisation who specialise in recruiting a diverse range of the population for inclusion in health research. They will work with community organisations across the UK to develop and distribute adverts highlighting the opportunity to be involved. We aim to include up to 40 members of the public, distributed across two groups of 20, to attend a series of parallel online workshops.
The workshops will use interactive activities, facilitating member contributions. Key invited experts will briefly explain various aspects of the topic. The majority of each workshop will be spent seeking public member perspectives through facilitating discussion, using 'breakout rooms' for smaller group discussion where needed to ensure everyone attending can contribute comfortably.
A public contributor who is part of the co-applicant team will co-produce a Q&A video with us to introduce the project and plan for the workshops. They will provide guidance on running accessible online workshops and ideas for engaging discussion. We will also engage with a wider group of stakeholders such as public panels within ADR UK and SAIL User Panel in particular on the workshop plans and recruitment plans.
Our outputs include recommendations for researchers and data providers based on the key themes identified from the first three workshops. The final workshop will confirm and/or amend these recommendations with members before producing a full written report. The recommendations will be relevant to departments releasing / planning to release synthetic data and researchers who access them. Projects 1&2 of the call brief, funded in parallel, are exploring these stakeholders' views in more detail and we will ensure our insights feed in to their work and recommendations. We will produce our own accessible output (e.g. an infographic) on the topic of synthetic data based on our recommendations which will be freely available.
Addressing project 3 of call brief, we propose a large public consultation to bring together a diverse group of the public to consider the following questions:
How much do you know already about synthetic data? And what are your questions now you know a bit more?
Do you have any concerns? What might allay them?
How can we explain the concept of synthetic data, its creation and use, in an accessible and useful way?
What should organisations such as data providers, funders and academics be doing to build and maintain public trust in the use of synthetic data?
We are partnering with an organisation who specialise in recruiting a diverse range of the population for inclusion in health research. They will work with community organisations across the UK to develop and distribute adverts highlighting the opportunity to be involved. We aim to include up to 40 members of the public, distributed across two groups of 20, to attend a series of parallel online workshops.
The workshops will use interactive activities, facilitating member contributions. Key invited experts will briefly explain various aspects of the topic. The majority of each workshop will be spent seeking public member perspectives through facilitating discussion, using 'breakout rooms' for smaller group discussion where needed to ensure everyone attending can contribute comfortably.
A public contributor who is part of the co-applicant team will co-produce a Q&A video with us to introduce the project and plan for the workshops. They will provide guidance on running accessible online workshops and ideas for engaging discussion. We will also engage with a wider group of stakeholders such as public panels within ADR UK and SAIL User Panel in particular on the workshop plans and recruitment plans.
Our outputs include recommendations for researchers and data providers based on the key themes identified from the first three workshops. The final workshop will confirm and/or amend these recommendations with members before producing a full written report. The recommendations will be relevant to departments releasing / planning to release synthetic data and researchers who access them. Projects 1&2 of the call brief, funded in parallel, are exploring these stakeholders' views in more detail and we will ensure our insights feed in to their work and recommendations. We will produce our own accessible output (e.g. an infographic) on the topic of synthetic data based on our recommendations which will be freely available.
