Facebook, data and the consequences for health

Missed the latest data scandal? Only if you were holidaying on Mars.

The revelation that Cambridge Analytica used personality quizzes to harbour detailed data on tens of millions of Facebook users has dominated the news agenda. Not least because it is alleged that the firm used this information to try to sway both the UK referendum and US presidential elections.

The response from media, commentators and politicians seems, to me, to be mixed. Outrage that this data was taken without people’s consent, concern at the ability of big tech giants to influence democracy and yet surprise that anyone would be unaware that their data is being used in this way. If you didn’t know before, you certainly know now that if something is free, then you are the product.

Anyone working in marketing, fundraising or data processing, will have had data on their mind way before this blew up because May will see the arrival, from Europe, of the General Data Protection Regulation (GDPR). This regulation sets to overhaul how companies and organisations can use personal data. One of the biggest changes is the need to obtain provable consent to use data, including a clear opt in. So if you’ve received any communications recently from organisations asking you to ‘keep in touch’ – this is why! The impact of GDPR should not be underestimated – fundraisers and marketers are expecting to lose huge staves of their contact and database lists which will hit income. I for one am curious to see how many of the numerous marketing emails I receive daily will simply cease come May.

But what does all this mean for health? This May will (also) see the roll out of the National Data Opt-out programme. This is billed as giving patients more control over how identifiable health and care information is used. In particular, patients and the public will be able to choose whether their data is used for researching and planning purposes. Health and care organisations will have until March 2020 to uphold patient and public choices. Will this be successful in the current data climate?

Cast your mind back to 2014 and the botched launch of Care.data – a plan to allow the sharing of NHS data across health and social care providers and research bodies. Many highly respected clinicians, academics and charities were firmly in support of this programme, clear it would allow better design of services and treatments and lead to greater understanding of diseases. However, the communication to patients and GPs failed to sell the benefits and fears that individuals' data could be sold to private insurance companies dominated the news. The programme was abandoned with a loss of £7.5 million.

Clinicians and researchers continued to be frustrated at their inability to access data, As the 2015 Cancer Strategy highlighted:

‘The completeness and accuracy of England’s cancer data is amongst the best in the world. However, the last few years have been very challenging for data analytics and linkage following changes in responsibilities and associated legislation introduced by the Health and Social Care Act 2012. Significant operational bottlenecks have also arisen in key organisations.’

Having worked in cancer policy for over 10 years, I am continually surprised by what we don’t know. Whether that’s how many women go on to develop secondary breast cancer or a thorough picture of the long term effects of cancer and its treatment. When we don’t know the answer to these questions, then how on earth can we design services effectively? And how can we possibly know if we are giving the best individualised treatment to the patient before us? It is only with the collection, and then sharing, of data that we can begin to see answers. It’s data that allowed Florence Nightingale to demonstrate the benefits of nursing and hygiene and for the proposed link between the MMR vaccine and autism to be dismissed.

This latest data issue leaves me both fearful and hopeful for the impact on health. Fearful that this will strengthen the public’s suspicion of big data and make future plans to connect and share patient data harder to sell. But hopeful that the intricate targeting techniques used by Cambridge Analytica could be used in health to deliver, for example, highly personalised public health messages.

I also wonder if this is just a problem that remains in the short term. A problem that bothers the older generations but not the younger. After all, we’ve been reminded frequently these past weeks that those digital natives, the millennials, have no problem with their data being shared. This more technologically savvy, and perhaps more health conscious, generation might well question why health systems around the world aren’t already using data intelligently to benefit their health and wellbeing.