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

Data collection Data processing Data protection Health data Online privacy Data management Privacy Information resources management United Kingdom

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 explored in this publication 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.

This report aims to:

  • Bring together the existing research on how citizens feel about the use and sharing of health and care data.
  • Unpack the key challenges that need to be addressed in order to reap the benefits of data-driven health and care.
  • Start to explore innovative ways of overcoming these challenges including new ways of engaging the public.
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