Stop Releasing Your Data Into The Wild
You don't have to give your data away for free. In fact, it is in everyone's interests that you don't.
By default, every article about data needs to contain a certain phrase. A phrase that authors use in an attempt to ensure every last laggard cannot 
possibly elude this decade's goldrush:
“Data is the new oil”.
I’m sick of this phrase. I’ve heard it countless times in the past few years, in just about every description or presentation of big data. Authors and speakers lap it up as readily as a gas-guzzling monster truck.
But worse, they’re wrong. There are two important differences between oil and data.
Firstly, oil costs money to extract. Huge amounts of money – and that’s after you’ve negotiated with governments and landowners for the rights to extract it.
Secondly, the black stuff is running out – so even the heaviest extractors are switching to shale gas or renewable investments over crude.
Whereas data, on the other hand, is plentiful, endless and effectively free. I mean, a full 90% of all the data in the world was created in the last two years, and the rate is still increasing. Getting hold of it is almost too easy.
Whilst there are plenty of laws covering the privacy of data, there is absolutely nothing stopping companies using it in anonymized form for all manner of insights that fuel new products and services – and yes, earning a pretty penny off the back of it. Indeed, the valuations of today’s tech giants are only partially based on the subscription fees we pay; they’re also hugely bloated by the records they have on their customers and the potential resale value or advertising potential of that information.
But here’s a question: should it be free?
I mean, we all know that medicines and healthcare services are improving as a result of EHR and claims data. We know that your Spotify suggestions are smarter due to analysis of listening habits. We know that new roads are built according to data on traffic flow. There are clear advantages to data being free.
But despite these advantages, as long as companies are making money and gaining power from personal data, almost any consumer is naturally predisposed to hate giving it away at a personal level. And when we discover that it is already being taken, and we cannot stop it being taken, it fuels the general loss of trust that we have with big businesses. Many argue that this distrust has played into the hands of populists, demonstrated by the international rise of candidates with no political experience and a disdain for establishment. And this was happening way before Cambridge Analytica.
Frankly, as unwilling consumers, the data is going to be of lower quality when we don't want to give it away. We regular humans don’t take to being fodder for corporate interests.
A rebalancing act
Imagine now, for a moment, that consumers are paid for giving up their data. Companies have to pay fairly for it – and have no choice in the matter. Consumers would have control of which data is made available, and each has the possibility of receiving fair compensation for it.
In the short term, yes, that would create a sudden data deficit. But in the medium term, it also creates… an engaged consumer. A partner.
It’s not too hard to see that if we were being paid for our data, we might want to be paid a little more by giving it up even more willingly, and even enhancing it with additional datasets. It is not too hard to see that some of us will set ourselves up as personal data entrepreneurs, guiding others and finding ways to add to it. And it’s not too hard to see that a wave containing thousands of new ‘property owners’ will become willing to work with, rather than against, big companies. Especially young people, who have never owned anything of real value before, and are looking for ways to fight against the gradual retraction of wealth that the youth generation is experiencing.
The clinical edge
In pharmaceutical research and development, the advantages are even clearer.
Imagine that your personal medical record is being sold (as it already is), but now you’re being compensated for it. To earn even more, you decide to enhance it by adding genotype or phenotype data to your data readout. You provide additional PROs (Patient-Reported Outcomes) on how you are feeling and what you are doing. You use wearable devices and link it all automatically, in real-time to your medical record, as a single comprehensive treasure trove of information. Suddenly, you are pharma’s ideal patient – someone who is adherent, available and transparent. The perfect clinical subject - whether part of a formal trial or not. Do you think pharma companies might want to pay for that? In my discussions, it certainly appears that way.
Pharma executives are deeply aware that currently, in the process of making medical data legal for resale and reuse, it is stripped of no less than 18 types of information. This meets HIPAA de-identification requirements, but it also means that data’s value to legitimate research is significantly reduced, and yet there is evidence that bad actors can still surreptitiously re-identify it. With explicit permission, the data is more useful to researchers, there is the ability to correct, refine, and enhance the data with your consent and cooperation as well as the subject’s compensation in return for its use.
The here and now
So let’s come back to earth. Isn’t this all science fiction, many years away – if not decades?
Actually, no. It’s a service you can sign up to as of today, September 6th 2018, and the ability for you to take on many of the tasks described above will go live over the next few weeks and months.
Today, Hu-manity.co, a new company co-founded by two former industry stalwarts, Richie Etwaru and Michael DePalma, aims to resolve the current “global misdirected focus on privacy” with “a new recognition of our personal data as our legal property”. You can download the app right now and begin selecting your preferences.
Over the past few months, the company has been working hard on new technology that identifies legal corridors in existing regulations, coupled with supporting artefacts, to design new intelligent contracts where individuals like you and I can negotiate new terms of consent and authorization with corporations. In other words, you decide who has access, what they have access to, and whether you want to be paid for it.
Eventually, within the appyou’ll be able to handle geospatial data, driver and vehicle history, consumer spending habits, medical history, even travel and recreational habits. Those who claimand exercise their new rights will enjoy the legal characteristics of property ownership for personal data such as involvement in sale, fair market value negotiations, sharing, lien, security, and protection from theft, vandalism or squatting.
A pioneering blockchain use case
With the app underpinned by IBM Blockchain technology (specifically, a chain of chains leveraging Hyperledger and Ethereum), this will become a serious demonstration of the power of blockchains beyond cryptocurrencies. The blockchain enables you to manage consent and authorization for use in your personal dataset in a transparent and incorruptible manner. Interestingly, IBM were specially selected for their longstanding commitment to responsible corporate data stewardship – and the notion of controlling our own data was a perfect fit.
As Adam Gunther, Director of IBM’s Blockchain Trusted Identity explains: “This is a vital venture and strategic investment for us, supported from the very top of the organization. More importantly it’s also a demonstration that this stuff is real – blockchain is now no longer an unproven concept, and indeed this initiative would be near-impossible without a distributed ledger. This is the perfect example to the world of what blockchain can really do.”
This industrial-strength technology is further enhanced by a commitment from both IBM and Hu-manity to apply the principles of the Sovrin Foundation, instigating a pilot project for members to be part of the newly established self-sovereign identity network. Think of this as the first step in the creation of a new global standard for identity that enables citizens to control all use of their personal information.
As for companies, a transition to new trusted and transparent industry designs will now be possible. It will enable humans and corporations to co-exist in a far more balanced and sustainable manner, with greater levels of security, privacy, control and consideration.
Within pharma, Dr. Dan Karlin, Industry Transformation Officer at Hu-manity has further insights. “There's long been hope that large patient datasets would yield novel insights that could progress drug discovery and development. The huge amount of inbound interest from pharmaceutical executives and we've seen since announcing Hu-manity, and the conversations we've had with these folks, confirm that the industry sees our innovation as a big step toward realizing the research potential of explicitly consented patient data.”
Slicker than an oil slick
So maybe it’s better if, like oil, data is no longer free. After all, the tech industry is awash with other well-tested phrases like ‘garbage in, garbage out’ and ‘you get what you pay for’.
We need to pay for quality. And that quality will usher in a new era of fair-trade business. One which treats everyone – especially the consumer – with real respect. I mean, we don’t want every company becoming an oil company, do we?