​Your medical records belong to you, and it's time to start sharing them

How Apple, Google and Facebook can revolutionise how we think about our data
The future of sharing health data

"When you go to your GP, the doctor knows all about your medicine, all about your condition. They have your medical records on a monitor that's pointing at them. That's informational asymmetry."

So explains David Doherty, co-founder and director of 3G Doctor – a doctor video consulting service, lamenting that state of affairs in the current model of the health industry.

His vision is one in which patients are empowered by their own data which they collect and share with their physicians on mobile devices. He believes it can change the way the health system works.

"The reality is that this is the biggest opportunity we've got," he tells us – and it's not going to be served by doctors in office appointments.

"If you start telling a doctor that their patient can be responsible for putting in information from an app, a wearable or research from the internet, then they will tell you that it's rubbish. They'll tell you that the patient won't know what they're doing."

"We have to have open conversations with patients. No longer can we pretend it's them and us. No longer can we pretend that we own the medical records and they don't. So, there's some very fundamental things that we need to get out of the way of us working in partnership with patients. GPs are holding on to them because they think that they own the medical records, because they put the work in."

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Doherty's vision is an open system, where patients are given the responsibility for their data, and it's something at the heart of his 3G Doctor mobile health service. Patients fill in a questionnaire before their virtual appointments, they share their medical concerns, a doctor reviews the case and then calls them up over video chat experience on a phone or tablet.

It's not free like the NHS and it's certainly not a replacement for your GP given that, for example, physical examinations are not possible. But it's a fast and more than adequate solution for the majority of complaints that would normally require a lot of waiting, a degree of travel and time off work to complete.

At the core of 3G Doctor is the idea of the patient taking charge of their own health information. At the end of your appointment, you're presented with a written report to view or download as you see fit and it's stored as part of your 3G Doctor Health Record accessible by the patient whenever they like and for them to show to third parties as they see fit. For Doherty, it's the start of a healthcare revolution that's been coming for a long time.

Disruptive data

"As soon as you start putting it onto a page where you can export data, it's going to change everything," he said. "It's going to change the way the music industry changed. These big companies that own medical records don't own them any more and they'll face disruption."

Doherty himself dropped out of medical degree at UCL after two years and instead began to research his own vision of the overhaul that he believes the health industry needs.

Currently, around 10 per cent the money spent on the NHS is tied up in treating patients with conditions related to Type 2 Diabetes. In 2012 that was recorded at nearly £12bn - around £1.5m per hour. According to 3G Doctor's co-founder, one of the major failings in this area is in the doctor/patient interaction.

Read this: NHS to introduce wearables for patients

Patients are lying to their physicians via their blood sugar diaries which are hurriedly filled in before appointments because the recording systems are too backward. The NHS doesn't look beyond the five minutes that they're in the room and then everyone's surprised when organ failure comes out of nowhere.

But even if just those GP practice sessions alone were recorded in detail in the first place, Doherty believes it could save thousands of lives.

"Why aren't we documenting all patient/doctor consultations? Currently, a young adolescent gets a rare cancer; you think that it came out of the blue. The reality is probably that they went to the doctor a few times before presenting with various symptoms. The incredible thing then is that you can go back in and see if another 18-year-old matches up with those symptoms, stop them from developing a terminal condition and begin to form a better model for understanding cancer."


"People in healthcare are so distant from the idea of collecting data like that, in the way that Tesco or Google or Facebook do. They find it hard to see the solution and they look to drug companies to come up with the answers."

"At the moment, as people pass away from terrible diseases, their medical information is going nowhere. No-one's benefiting from how the best practice drugs have been working with their condition and how effective they've been."

Apple ResearchKit changing the game

Still, Apple's ResearchKit is work in the right direction. "That's going to push a lot of people to realise what's going on with medical information, whose data it is and the positive benefits of sharing it," says Doherty.

ResearchKit will allow iPhone users to participate in medical studies by simply uploading their medical information at the touch of a button. If they meet certain age, location and health criteria, they may find themselves as suitable data points for researchers to collect without need for the academics and scientists behind them to spend big on time and money to get the sample populations.

There are obvious concerns such as how trustworthy the data is, and whether or not it shows social bias, but they're relatively small compared to the enormous upsides as Doherty highlights.

"Cancer research companies can stop doing all the fundraising and can actually work with patients. The current price of putting someone on a six month clinical trial of oncology drugs is around £250,000. The incredible thing that ResearchKit will do is allow the patients to export data.

If you're a cancer patient and I come to you as an oncology drugs company and be clear that we're all about being open source and sharing, will you hesitate to share you data with me at the promise of a better future for those like you?"

"Every customer with a Tesco Clubcard is helping Tesco improve their business by providing all that shopping data. It's making them money. So, why aren't we doing this with medical trials as well?"

Dealing with data scares

Some of the answers to Doherty's questions lie within his conditions of openness and honesty. There is a feeling with health data at the moment that we're not treated fairly. All too often, there's a company getting rich off our support when that hadn't been what we'd signed up for in the first place.

Whether that's people feeling miffed at Oculus Rift when it sells out to Facebook - with barely a thank you to the community that crowdfunded it - or a service such as 23andMe that sells your genetic data on to pharmaceuticals companies which your £124.99 saliva sample has made possible; there's a huge amount of customer suspicion out there.

"In the case of 23andMe, they're selling that information on to a big company to make a multi-million dollar deal. How long are people going to do that?"

"You're not the customer in healthcare. You're the product being sold, bought and traded. You're the patient with XYZ disease – that's how the healthcare industry sees you."

With 23andMe it's an opt-in situation and the company has taken great pains to make sure that it's been as open as possible once the change in business model was made, even if it wasn't clear to customers at the start.

One of the worst abuses of user trust in healthcare data, though, was perpetrated by the care.data programme. Announced in the spring of 2013 in the UK, the idea was to take patient data from GP surgeries, anonymise it and then sell it on to insurance companies at a profit which could then help support the NHS. While it was all very good in theory, some big mistakes were made on the way and it's ended up lambasted for its errors, its expense and its damage to the perception of healthcare data use.

"Care.data never went to you and ask you if it was ok. In fact, they did ask people for consent to put their medical records in the system. A few hundred thousand said no, and then they put them in anyway which completely undermined the future trust. It made people realise that the information wasn't secure," says Doherty.

Big tech brands can build trust, not erode it

"The easiest way to make people trust you is by making them a customer," suggests Doherty. "The reason why care.data means nothing to you or me is because we're not a customer."

"A lot of doctors say that they patients won't know how to handle their data; they'll accidentally share it on Facebook, they'll do stupid things with it, they'll lose it. They don't realise that companies like Apple will come along and make it easy for users to look after it instead."

"If Apple gets a breach where people get the data, there's a massive class action against them. This is why Apple has had to take kid steps. So, they become a better company through it and they make sure they get it right. When they have conversations about data privacy and security at the NHS, they're not as high a priority as the same questions being asked at Apple."

Read this: How Google will make billions from your blood pressure

"The NHS use its own people internally to deal with this stuff. Apple knows that the top people don't work for them, so they go out and get them in. The value of Apple is wrapped up in that and, if Apple fails, it will be another company's turn."

"There are also a lot of myths about data privacy that have to be taken out of the conversation. You get people moaning about it but all the while they're quite happy to say all sorts of things on Gmail and social networks."

Doing your data duty

"A medical record at the moment actually says very little all about you. It's just a list of all your diseases and what's going on with them. It doesn't talk about anything as personal as sexual preference but Facebook does. Facebook knows about everything you do."

Those using social networks and free email providers are, of course, incentivised and the truth of the matter is that people who shun such services because of data fears probably do so also because they're not interested in what those platforms offer them as much as anything else.

In the same way, to most of us, uploading your medical details doesn't seem worthwhile on first sight but, in reality, it's of far more value to us than the ability to see what your friends are up to.

The trouble is that the pay-off is less immediate, less direct and far less focused at the individual level and, ultimately, part of it is that we're probably far too inherently selfish to trust in the vision in the way that it's been proposed to us up until now, but then what if that proposal changed?

Actually, sharing one's healthcare data for the good of society is not all that different to giving blood. Ignoring the nice, sugary biscuit, the only immediate incentive to be drained of a pint of our vital essence is the our sense of civic duty and the feeling of pride of having done something good for the world.

Sharing your information hurts a lot less than a needle and you don't even have to leave home to get it done. The National Blood Service has done an amazing job of making the process first and foremost impeccably safe and, secondly, created an image that's one of distinction. Keep these two tenets at the top of the list and healthcare data collection might just have traversed this necessary quagmire of mistrust in which it currently finds itself stuck.

"The NHS doesn't even have to build these services," finishes Doherty. "The free market's already doing it and building better ones. We can spend millions on schemes like care.data but it's the sharing tools at the customer level that's really going to change things."

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