This has been a long time coming. Platforms have utilised the easiest business model they could and closed their eyes and crossed their fingers that it would be too annoying, too complicated or too late by the time people started wanting to take control of their own data. That business model being that platforms make money by selling your data to organisations public and private for marketing/advertising purposes.
In Facebook’s case they use what they know about you through your data to offer targeted marketing, whilst they retain the deep data knowledge, a pyramid of access, but it still the same model. It is old fashioned but it works. (I know that Cambridge Analytica take this data and do monstrous things with it, but I am talking specifically of the source: the platform).
The irony that such ‘disruptive and innovative’ social platforms that purport to drive the future of the digital revolution are actually just old stuff dressed up in fairly shouty and shiny new clothes is easily lost.
For years I have been waiting for the other shoe to drop with regards to people wanting ownership over their own data, so that they can *choose* when to share what information with whom and in exchange for what.
I thought this moment would come with health information. In the UK certainly, the NHS struggles with communication between surgery, hospital, clinic and other medical establishments, meaning that whoever is treating you never has the whole picture. It is a relatively simple solution, that I know doctors and surgeons across the land would love to happen, and that is for every patient to own their own records, keeping them under digital lock and key and sharing that information with the relevant medical practitioners at the right time. Much less frustrating all around.
Of course once this information is held and controlled by the individual, the smarter developers, researchers and platform owners would then have to come to you and ask for access, you can then choose to give access to all, some or none of your data — and for what in return. I believed this would be the tipping point and people would then start collecting their data from everywhere and so the tide would turn.
However it was not to be. Facebook and Cambridge Analytica have managed to scare the bejesus out of everyone — leading to a mass exodus, kind of, and a lot of finger pointing and noise, but not very much substance.
Does this fundamentally break the trust between people and social platforms? It has certainly rocked it to the core and I am not sure that Mark Zuckerberg has gone far enough to reassure or to reboot that relationship. But neither does just leaving Facebook solve anything — unless of course you were just fed up of it anyway, but leaving in fear worries me.
It would be good if we could use this opportunity to persuade the social platforms to change their business model. To be grateful that they have got away with it for so long, they must have known this day would come.
Social platforms should give everyone their own data, they should not have it — it should be held in a digital account that a person would own and manage as they would their bank account, (or personal health records if we had got that far yet!).
New platform business models should be built around that premise, making it simple and unerringly transparent for people to share or trade their data.
We all know that there is a multi billion — if not trillion — dollar market in worldwide data trade, if you want to get geeky on this look up the Annual Revenue Per User (ARPU) figures. In 2017 this just tipped over the $5 mark for Facebook alone and it was growing at an increase of 26% in that year, with users in Canada and the US having an ARPU of $21.20. That’s fine, don’t cut it off, just be smarter about it: give people control over their own data, a fair price for use of it — and make the whole transaction simple and transparent.
Here are a couple of links to explore how you can request your medical health records https://digital.nhs.uk/article/6851/How-to-make-a-subject-access-request and here https://www.nhs.uk/chq/pages/1309.aspx?categoryid=68
Emma Mulqueeny 