This short paper summarises a series of exercises undertaken by the RSA, the Open Data Institute and Luminate over 2019-2020 that sought to interrogate how people feel about the rights and responsibilities needed to govern the use of data about us - and how we realise the value of data about us.
Despite being about us, decisions about data use are rarely in our favour, but rather in the favour of the company or public body we are being asked to share data with. While we have rights over how data about us is protected, some policy makers are starting to consider whether framing the challenge as increasing ‘ownership’ of data would give us greater control.
Last year, in collaboration with ODI and Luminate, we sought to identify whether the concept of ownership chimed with the public, or whether the rights model had greater resonance and required improvement.
Since publishing our initial report, we have taken the conversation into new arenas; we have conversed with policy makers and experts about the research in meetings and at public events; including two successful conversations at the Conservative and Labour Party Conferences last year.
In addition to this, we reconvened in February 2020 and collaborated with the German not-for-profit think tank Das Progressive Zentrum to host two half-day workshops. One in London and the other in Berlin, where we presented our work and listened to the views of organisations.
We asked these experts - just as we did with the public in last year’s work - to discuss their personal thoughts and feelings on data, rights, and ownership. We presented and discussed our research, and asked for feedback on what, if anything, they felt it could do to help stimulate wider conversation within their work.
Just as in our original public conversations, points regarding honesty and transparency, rights and responsibilities, agency and control, compliance and enforceability and context and fairness were given as critical facets of the debate around data.
This short paper outlines the key discussion points that were raised and articulates the next areas of work.
Download Talking about data about us (PDF, 1.6 MB)
Patient AI: towards a human-centred culture of technological innovation in the NHS
This short paper with NHSX looks at the ways in which radical technologies, such as AI and ADS, are influencing commissioning and clinical practice in the health system.
About Data About Us
This paper summarises the findings of a project by the RSA, the Open Data Institute (ODI) and Luminate exploring narratives around data rights and data ownership: how people feel about data about them, and how we can find ways to talk about data that everyone can understand and engage with.