Keeping medical records from patients is holding back medicine

Oliver Smith at The Memo summarizes it this way.

There are big challenges with the outdated and often dangerous way our healthcare records are being kept from us, and it’s starting to hold back medicine.

The article titled “Broken, illogical and full of errors: Our medical records are a mess” explains why health care records are kept from patients in the first place, with the exception of pregnant mothers, and urges us to consider the dangerous effects. By giving patients full access to their medical records, Smith writes that it would not only reduce those mistakes and cut healthcare costs but also allow for healthcare innovations. He features innovators Patients Know Best CEO Dr. Mohammad Al-Ubaydli and Babylon Health CEO Dr. Ali Parsa who are tackling these challenges.

Click here to read the entire article.


Posted on The Memo and written by Oliver Smith

Broken, illogical and full of errors: Our medical records are a mess

SUMMARY

There are big challenges with the outdated and often dangerous way our healthcare records are being kept from us, and it’s starting to hold back medicine.

There’s a fundamental problem with our medical system in Britain, and it’s about your personal healthcare data.

We’re lucky that the NHS is high-quality, free at the point of use and universally available for all, but when it comes to your medical data it’s entirely backwards, which is a huge problem because that data could revolutionise healthcare over the next few years.

You can request online access to ‘summary information’ from your GP, but it’s only a tiny subset of the total data they hold on you.

Have you ever wondered what your GP is looking at on their computer screen during a consultation?

All the notes, records and test results collected ever since you were born, it’s all your data, but if you ask to see it your doctor will likely claim you won’t be able to understand it, you might misinterpret it or it’ll just worry you.

And that’s becoming a problem because at the cutting edge of healthcare technology new innovations are springing up to analyse this data, dramatically cutting the costs of healthcare and providing a service more accurate than what traditional doctors are capable of.

The other challenge is that, because you (or indeed anyone outside of your GP) have never seen your own records, it’s likely that most people’s medical files are full of mistakes.

Mistakes which could and have led to incorrect treatment and, in the worst cases, death.

So who owns your data?

Mohammad Al-Ubaydli has spent the past seven years building a service to store patient records in a secure, structured way.

It wasn’t always like this, in fact it sadly used to be far worse.

Before the NHS back in the early 1900s doctors would physically lock up their notes, refusing to share them even with colleagues and nurses as their livelihood rested on controlling the notes they had written about you, so you were tied to them.

Some argue that this practice hasn’t really changed much over the last century.

But sharing patients notes did begin slowly between doctors and eventually across nurses and hospitals, but always stopped short of giving patients any control over their own records.

“Professionals have confused physical possession with ownership or control, they’ve confused the fact that it’s currently in their system with ‘it’s supposed to be in their system’,” Mohammad Al-Ubaydli, the CEO of Patients Know Best, an open source service to put patients in control of their own records, told The Memo.

That’s not entirely true, there are some patients in Britain who have complete control over their records.

For the first nine months of your life your mother has total control over your medical records. It’s a historical exception that mothers carry paper health notes on their child with them, due to the sheer number of doctors and medical professionals they bounce between.

This changes the very moment you are born, when paediatric staff put their notes in the hospital’s paper or computer system, which is likely the last time you’ll ever see them.

Today no one really knows who owns your healthcare data. But everyone from the doctors you see, to the hospitals you visit and even the medical notes software firms have a vested interest in you being the last person to own your own data.

Dr Ali Parsa believes the patients of the future will embrace online healthcare in the same way they have embraced online shopping.

An innovation roadblock

“It makes absolutely no logical sense,”Babylon Health‘s founder and CEO, Dr Ali Parsa, told The Memo. “And when you start talking to medical professionals they make such a big fuss about it.”

Babylon offers GP and specialist doctor appointments through an video-calling app on your smartphone 12 hours a day, 7 days a week.

But Babylon can’t import your medical data from your GP, regardless of whether you want a one-off appointment or even if you switch to Babylon as your full-time doctor.

Instead Parsa is forced to collect a new records on each patient Babylon sees, that’s a problem for them and is enough to turn some people off to switching.

“Our own research says that 4 out of 5 people should be using a more mobile service like Babylon,” says Parsa, highlighting the increasingly digital, fast-paced lives we live where booking a GP appointment and taking the time off work is becoming untenable for most people.

If our records were held online in a modern format, patients could be given the choice to share them with the doctors, apps or medical services they choose

Patients Know Best raised £3.5m last week from Balderton Capital and Maxfield Capital to continue building its patient-owned healthcare records service.

Mistakes happen

There’s another problem with not sharing medical data with patients and among doctors, mistakes happen.

“Everyone’s notes are full of errors, because they were taken by human beings, in a limited amount of time and with a limited amount of knowledge,” says Al-Ubaydli.

This is the biggest problem, the risk that dozens of tiny errors could eventually lead to a potentially life-threatening misdiagnosis.

“You’ve got this deadly combination of the patient not knowing everything – because they’ve never seen their own notes – and the doctor misinterpreting something the patient has said. So you end up with an increasing number of errors accumulating in your notes.”

In 2013 there were 114,740 deaths in the UK considered “avoidable through good quality healthcare”, according to the Office for National Statistics, with professionals not knowing the correct information about their patients certainly playing a part in that.

If our medical records were truly our records, we’d have a better chance of spotting these mistakes and, in sharing the data between doctors, would reduce the chances of a mistake slipping through.

There’s also the fear among some doctors that notes that they have written in patients’ medical records were never intended for a patient to see, like the slang that was often used to insult patients before the advent of computerised records, might now become known to patients.

Putting your health in your hands

The Government pledged that from April 2015 we would be given online access to our GPs complete medical records on us, however this was later scaled back to only require ‘summary’ information based on the notes taken to be shared.

This covers a very limited subset of your health data, like medicines you are taking, allergies you suffer from and bad reactions to medicines that you have previously experienced.

Additionally the data is locked into online portals, meaning it cannot be exported or downloaded in any useful format.

The Government has outlined its ambition that by 2018 every citizen will be able to access their entire health records online, covering every test result and every visit to a GP or hospital they’ve ever had.

But so far we’ve got no idea how they are planning to achieve this, or even if the incumbent groups of doctors, GPs or 470 NHS Trusts across the UK will agree to support their intention to give every patient access to their own data.

If the plan does go ahead and patients get full access to their records, we could be one step closer to the dawn of a new safer, data-driven healthcare revolution. And even if the NHS doesn’t keep up with the change taking place, it’s feasible that companies like Babylon will simply push ahead without them.

Oliver Smith is a Senior Reporter at The Memo. Winner of the Gold Award atMHP’s 30 To Watch 2015, he previously covered technology, media and telecoms at City A.M. newspaper. He can be found tweeting @OliverSmithEU.

 

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