Dialogues about Data: Building trust and unlocking the value of citizens’ health and care data

The last decade has seen exponential growth in the amount of data generated, collected and analysed to provide insights across all aspects of industry. Healthcare is no exception. We are increasingly seeing the value of using health and care data to prevent ill health, improve health outcomes for people and provide new insights into disease and treatments.

Bringing together common themes across the existing research, this report sets out two interlinked challenges to building a data-driven health and care system. This is interspersed with best practice examples of the potential of data to improve health and care, as well as cautionary tales of what can happen when this is done badly.

The first challenge we explore is how to increase citizens’ trust and transparency in data sharing. The second challenge is how to unlock the value of health and care data.

We are excited about the role for participatory futures – a set of techniques that systematically engage people to imagine and create more sustainable, inclusive futures – in helping governments and other organisations work with citizens to engage them in debate about their health and care data to build a data-driven health and care system for the benefit of all.

Authors

Sinead Mac Manus

Sinead Mac Manus

Sinead Mac Manus

Senior Programme Manager, Digital Health

Sinead was a Senior Programme Manager for Digital Health in the Health Lab.

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Alice Clay

Alice Clay

Alice Clay

Programme Manager, Health Lab

Alice focused on Digital Health projects, new technologies, and ways we can create and use data to empower people to improve their health and wellbeing.

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