Citizen generated data

6 February 2018

What is citizen generated data? What are the implications of citizens generating increasing amounts of health-related data outside of the healthcare setting? What opportunities and challenges does this pose for health services? What is the value of harnessing this data for health?

Why it matters

Traditionally most health related data has been produced in the healthcare setting, but this dynamic is beginning to change. Citizens are creating masses of data outside of the healthcare setting by interacting with various digital technologies - this data could help inform disease prevention and improve treatment strategies at both the level of the health system and the individual patient. To date there has been relatively little focus on the impact of citizen generated health data and the opportunities and challenges to harnessing this data for health. We want to help explore whether and how this data could be used effectively to improve our health. 

Citizen generated data includes all the data we produce, whether for specific health-related purposes, lifestyle goals or just by interacting with a 21st century, digitally enabled world. 

Our objectives

  • To assess the opportunity for citizen generated data, now and in the future, to inform and improve our health
  • To examine the key elements required to harness citizen generated data to make healthcare better
  • To explore how in the future, individuals may interact with outputs and analyses of citizen generated data to improve their health


What we are doing

  • Building a forum for those with an interest in self-monitoring and user-generated data to develop and share ideas
  • Reviewing case studies and examples of how citizen generated data are informing and improving the personalisation of health i.e. improving the delivery of healthcare and supporting individuals to better understand their health
  • Examining the practical, technical, social and ethical aspects surrounding the use of citizen generated data

Get in touch

Are you interested in citizen generated data? If you are interested in contributing to our project, please get in touch with our policy analyst Dr Sarah Cook on 01223 761907.

Genomics and policy news