With the General Data Protection Regulation (GDPR) on the horizon, the Cambridge Analytica scandal has provided a stark reminder of the importance of data protection laws. Investigative journalists revealed that the data analytics firm harvested personal information to inform political campaigns from Facebook users without their permission, and last week Facebook confirmed that the number of users affected may be as high as 87 million.
It wouldn’t be surprising if a data breach on this scale affected people’s confidence in data sharing of any kind, making them reluctant to allow their data to be shared under any circumstances. When data is used improperly it can leave people feeling betrayed, and stories highlighting examples of good data sharing are less newsworthy.
But big data has the potential to transform many areas of our lives, not least in healthcare. NHS data, used appropriately, can improve our understanding of disease, inform decisions on diagnosis and treatment, enhance safety monitoring, and drive the development of new treatments.
According to Understanding Patient Data, more than two thirds of the population don’t know how their data is used in the NHS. Their recent #datasaveslives campaign includes a series of great animations explaining how and why patient data can be harnessed to benefit all of us.
The issue of benefit is key – when patients are properly informed, and can see that the aim of any data sharing project will genuinely benefit others, they are more inclined to agree to their data being used; as people understand more about the benefits and risks involved, they become less sceptical about health data sharing.
GDPR will modernise the legal framework for privacy and the protection of personal data across the EU. It’s clear that there is an urgent need for enhanced public understanding of the issues around data sharing, so that big data can be used to transform patients’ lives.