2018 has been a landmark year for data protection and privacy. In May, the government declared data laws ‘fit for the digital age’, through the much-anticipated GDPR. However, breaches have since been rife. A month later, Facebook was fined £500,000 for failing to ensure Cambridge Analytica had deleted users’ data and, this week, Google has been accused of unlawfully storing data about people’s location.
These incidents call into question the validity of organisations holding and sharing personal data, including the government. Given the benefits data can bring to the public sector, government must differentiate itself and demonstrate that it sees citizens’ privacy, security and consent as the cornerstones of data sharing.
Sharing personal data may be contentious in the current climate, but its benefits for public services are great. When GPs and hospitals share information, for example, they can identify which patients are most at risk of unnecessary hospital admissions, which has reduced admissions by 30% in some areas. In Leicester, smarter information sharing between mental health nurses and police has seen the number detained for mental health issues reduce by 80%. For issues such as loneliness and rehabilitation, which cut across services, multi-agency sharing of personal data can be truly transformative.
However, public trust in the government’s intentions and ability to share data remains low. Currently, just 9% of people feel that the government has their best interests at heart when data sharing, and only 15% are confident that government organisations would deal well with a cyber-attack. The recent history of large-scale attempts at data sharing has not helped to secure confidence.
In 2014, the care.data programme, designed to allow anonymised primary care health records to be shared outside the NHS, had to be paused after loss of public trust. Personal data was used without clearly explaining to the public its intent, leading to concerns about consent and security.
The way in which data is used and by whom affects levels of trust and confidence. For example, in one survey, 84% of respondents felt that health records should not be sold to private-healthcare companies, but over 70% thought that all hospitals and GPs should be able to access health records for patients’ care. Government should take these differentiations into account and show the public where sharing data can bring about benefits.
Considering attitudes towards data sharing are time and context dependent, engaging citizens and clearly explaining when and why data is used can help build confidence. There are already projects aiming to bridge the gap between data use and public knowledge. The Wellcome Trust’s ‘Understanding Patient Data’ has been set up to explain how health and care data is used. The trust has found that if the public knew more about the processes and safeguarding of data sharing, they would be more open and trusting to these arrangements. These initiatives would help improve trust across the public sector.
Transparency will only increase confidence if accompanied by better protection over personal data. The tech revolution is opening new avenues for improving security. Digital, encrypted data audits can securely trace when personal data is used and by whom, to ensure access is only granted when it should be.
Blockchain technology is being tested in healthcare to give users access to different parts of the healthcare system, such as GP notes or hospital records, and ensures every interaction with personal data is auditable, transparent and secure. Creating spaces where people can access this information and see how their data is being used, in a language they can understand, is key.
As more data is collected and generated, there is huge potential to analyse and share data to improve public service delivery. However, the way data is used matters. As tech giants in Silicon Valley come under scrutiny for breaching data laws, the public sector should act as an example of best practice, where privacy, security and consent are put first. The result for public service delivery could be truly transformative.
