Following Google’s recent secret purchase of patient data, Sam Hughes calls on marketers to safeguard the data we use in campaigns every day.
The data on our phones and computers can tell an intimate story about who we are. Sometimes we want that story kept private.
Whether it’s the health condition we were searching about last night, the recently purchased engagement ring, or the emails exchanged with a prospective new employer – we have a right to know that our data is safe. We have a right to control how this data is used and be able to control who can see this data.
Nowhere is this more important than in healthcare. That’s why Google’s ‘Project Nightingale’ has caused controversy in purchasing the health data of 50 million American citizens.
Currently, Article 8 of the EU Charter of Fundamental Rights enshrines the protection of our personal data (though after Brexit this may not be the case). If the NHS were to move towards privatisation and private health insurance becomes the new normal, like in the US, then data relating to a chronic health condition shared between private groups could be the difference between an insured life and an unaffordable one. But, would this make us more hesitant to see a GP in this situation?
For example, if people were more reluctant to discuss their health with GPs, the effect on rare disease research could be catastrophic. By nature of their rarity there are fewer data points to analyse, but if individuals were to avoid discussing health with their GPs this figure would diminish even further.
Sharing with our GPs is good for our health, and we need to protect processes that allow it to happen privately and call out companies who break this trust.
Despite this tech-related suspicion about data use, many of us do not moderate our behaviour accordingly and reports estimate that Facebook alone has about 52,000 individual data points on each person.
So why don’t we change our behaviour despite the concerns? It might be because if we all want access to the latest technology and services, then we do not really have a choice but to consent to a company’s terms of service. The alternative is being locked out of big parts of modern life.
With an ever-expanding health tech sector, it is little wonder that there have been calls for a Hippocratic Oath for data scientists.
Like it or not, the value of data relates to its ability to sell products, and as marketers we are at the centre of the ecosystem which has enabled this.
So what can we do about it?
Other than specific data-led services, there are very few cases where any personalised data is required: a great marketing strategy can be reliably informed by anonymised data.
But, there may be cases where we feel pressured to build campaigns which include unnecessary data gathering, or cases where we suspect our clients or employers are collecting, using or selling data without consumer knowledge.
In these situations, it is our job to raise our concerns. Just as we would call-out scope creeps, we should call out data creeps too.
No one should ever be served an advert about their health secrets. No one should find their personal data and the story it tells about them sold to the highest bidder. Not only is it bad marketing and morally dubious, but it’s creepy too.