Citizen generated data
Smart devices, fitness trackers and ever greater connectivity are allowing us to collect more data about ourselves than ever before, with tangible benefits for healthcare and public health. How do we realise that potential?
Research
Traditionally most health related data was produced in the healthcare setting, but this dynamic is beginning to change. Citizens are creating masses of information outside healthcare settings through the increasing use of digital technologies. The data from these interactions could help inform disease prevention and improve treatment strategies at both the level of the health system and the individual patient.
Why it matters
In 2008, 17% of people in the UK owned a smartphone. In 2018, that percentage was 78%. For good, or (maybe) ill, recent years have seen these devices become central to people's lives. The rapid growth of smartphone technology, and concurrent infrastructure improvements have driven an explosion of 'smart' technologies: from watches and fitness trackers to other, more specialised devices, all collecting and storing data about us as individuals. Such data could have great value for healthcare.
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.
There is growing policy interest in using citizen data, but 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.
Our work
We explored how citizen generated data might be used appropriately and effectively to improve our health, now and in the future. In particular, we examined how individuals may interact with their own data to improve their health, and the critical elements needed to harness citizen generated data to make healthcare better. This included desk-based research and analysis, expert interviews, and a cross-sector round-table discussion event.
- Reports
- Policy briefings
- News
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Success of future health systems hinges on access to data, say experts
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Health and research organisations respond to GDPR consent guidance
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PHG Foundation evidence to Commons Genomics and Genome Editing Inquiry
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Cambridge think tank tells next Government it must 'go further' on health
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PHG Foundation responds to new profiling provisions in the General Data Protection Regulation
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PHG Foundation to speak on genomic data sharing in Washington
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England's Chief Medical Officer to speak at Cambridge conference
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New guidance urged on duties of care resulting from genome sequencing
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Future medicine depends on building public trust in data sharing
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PHG Foundation to speak on genomics and personalised prevention at PHE conference
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NHS discount for conference on the future of personalised healthcare
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Cambridge genomics pioneers celebrate 20 years of making science work for health
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Report calls for increased awareness of ctDNA testing for lung cancer
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AstraZeneca lead sponsor for Healthy futures: genomics and beyond
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Further support for clinicians essential for success of genomic medicine, urge experts
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NHS doctors need more support to deliver genomic medicine to patients, says Cambridge think-tank
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Unique science for health policy think-tank joins University of Cambridge
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UK Government must act to realise the full potential of genomics in the NHS
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Public support for NHS data sharing key for personalised medicine
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Hype and hope – picturing the future of a technology optimised-healthcare system
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Pathogen genomics is transforming infectious disease surveillance
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Personalised medicine technologies report to launch at NHS Expo 2018
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Making science work for health: towards personalised prevention
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Legal ruling restricts international sharing of genomic data
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CAPE policy fellowship supports PHG Foundation work in precision medicine
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Data protection: sharing genetic data for biomedical research
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PHG Foundation seeks new Director to help science work for health
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Patient information and lessons from the pandemic for research
If you would like to know more about this project, please contact Laura Blackburn