Unlocking Your Health Data

A data revolution powered by patients

High quality data is the lifeblood of any artificial intelligence project - all the more so when it comes to AI in healthcare. Here in the UK we are often told that the vast ocean of data held by the NHS gives us a unique advantage but fears over patient confidentiality have so far made it hard to unlock the value hidden in our health records.

But now a tiny business believes that it has found a way of putting the health data of millions of people to use in a way which will provide a great resource to researchers while making sure patients feel in control. That business is Patients Know Best, an online portal which offers patients a way to store securely their health records and keep track of their interactions with the health service.

Its founder and chief executive Mohammad Al-Ubaydli says a big moment for the organisation came in May this year when it became possible for users to store their GP records on the PKB platform alongside their hospital data. GP records have historically been extraordinarily difficult for researchers to access, even when patients have given their consent. For most people, visits to the GP are far more frequent than visits to the hospital and the combining of the two datasets will provide a much more complete picture of the patient’s medical history.

By adding internationally recognised codes identifying health conditions and medications to the records, PKB can make the data more useful as a research tool. For instance, explains Dr Al-Ubaydli, it is already proving its worth in speeding up recruitment to clinical trials:

“Somebody running a clinical trial can say to us, ‘can you show my trial to everyone who’s got Parkinson’s and is on a blood pressure medication and is more than 50 years old?’ for example. And so everyone who matches that, we show them the trial, and then we say, ‘this is the researcher, this is what they’re doing. Are you interested?’ ”

It is only at that point that the record is opened up to the trial recruiter, who must then go through the consent process with the patient. Since May 1st 2.3 million people have put their combined health records on the portal, with another 70,000 being added every week. “From the researchers’ perspective, that’s a really good sample to get representation of everyone they want to do research with.” It is easy to see that this must be a quicker way of recruiting trial participants than asking doctors to put the word around, which has been the traditional method.

But Mohammad Al-Ubaydlii says that another new source of data could prove even more valuable. “We’re starting to receive a lot more data that’s real time from the patient,” he says. As remote monitoring of patients takes off, phone apps, smartwatches and other wearable sensors will be generating vast amounts of data. “Everyone talks about ‘the record’ as what the doctor wrote, but actually what’s happening in your home is much more accurate and real time than what the doctor has.” He gives as an example phone apps that measure the user’s gait - an idea that is taking off in the remote monitoring of people with Parkinson’s.

The next big move is a plan to open up the PKB platform to allow innovative third-party AI apps to interact with the data that is so vital to their success - but only once the patient has given permission.

‘The patient is now collecting more data than ever before in history, and they are the legal mechanism for releasing more data than ever in history,” says Mohammad Al-Ubaydli.

Despite a recent growth spurt, PKB with a workforce of around 100, remains a relatively small business, run as a social enterprise. With eye-popping prices being paid for anything connected to AI, I suggest to Mohammad that PKB is well-placed to cash in.

He laughs and recalls the early days when investors said he should consider selling patient data. When he explained that it was owned by the patients “they looked at me with something between pity and contempt.”

The AI giants have often been cavalier about building their empires on other people’s data without asking permission. But PKB believes that when it comes to health data the only way forward lies in respecting the owner’s wishes.