I'm diabetic. I'd rather risk my shared health data being stolen than a double amputation
You want my medical records? Good, take them – now find me a cure
Register debate Welcome to the latest Register Debate in which writers and experts go head to head on technology topics, and you – the reader – choose the winning argument. The format is simple: we propose a motion, the arguments for the motion will run this Monday and Wednesday, and the arguments against on Tuesday and Thursday.
During the week you can cast your vote on which side you support using the poll embedded below, choosing whether you're in favour or against the motion. The final score will be announced on Friday, revealing whether the for or against argument was most popular. It's up to our writers to convince you to vote for their side.
This week’s motion is: Assumed consent is the right approach for sharing healthcare patients’ data, beyond their direct care. Or to put it another way: patient records should be shared with medical researchers on an opt-out basis.
The debate around the benefits of sharing medical data for the greater good versus individual’s expectations of confidentiality and consent, has become heated to say the least over the last year and a half. But if consent is not just assumed, but informed, do we all stand to benefit? Our contributors serve up their own prescriptions, but you get to decide.
Our second contributor arguing FOR THE MOTION is Dominic Nutt, a patient advocate and health campaigner specialising in new approaches to medical trials and driving medical innovation. He has been a type 1 diabetic for 40 years and is a rare cancer patient.
Our data is already bought and sold for profit. And we love it. Whenever we send an email, interact with our “free” social media accounts, when we walk down the street, through a shopping centre or log on in a coffee shop, our data is grabbed. We give it up for free Wi-Fi. As technophiles, I know most of you will be ahead of the game. But the vast majority of us don’t bother to argue, bought off by getting free access to a digital world. We don’t, for the most part, anonymise ourselves with VPNs nor opt out of marketing cookies.
We prostitute ourselves for a quick digital thrill with little real benefit. Nothing to write home about, anyway. But we pay a huge price – our very democracy has been rattled to the foundations with our data used to manipulate voters. But so what? I got a free email address!
Sharing our health data, which, unlike our digital data, will be automatically cleaned, will revolutionise our healthcare. It will change the way research – currently based on the diminishing returns of randomised clinical trials – takes place.
I am a type-1 diabetic. My antibodies attacked cells on my pancreas. I was also diagnosed with a rare cancer, which, if – or more likely when – it comes back it will be incurable.
Most of us who die from a cancer will die from a rare one that relies on old and failed treatments. But big pharma tends to ignore these orphan diseases. Why bother when so few patients – customers – will get the disease? There is no market.
So very little research that will lead to new therapeutics is carried out into rare diseases.
And what about common and chronic diseases – dementia, depression, heart disease, and pretty much any condition associated with senescence? Most of us are going to get old, after all.
There is a new movement in medical research to repurpose cheap drugs that are already in existence. Two examples are bisphosphonates – currently used to mitigate the effects of osteoporosis – and metformin, used to treat type-2 diabetics.
Yet they show genuine promise beyond their current purposes for decreasing the global incidence of a host of common diseases, including a range of cancers, heart disease, and neurodegenerative conditions.
Both are as cheap as chips because they no longer have intellectual property (IP) protection. As a result no big pharma company will invest in researching new uses for these old drugs, because without IP rights there is no profit to be made.
Public sector researchers – universities, for example – are also stymied. To carry out research on the effects of a mass-use drug needs data from thousands, if not millions of people. They can’t afford to run such research.
Yet the data is out there. Millions of people already take these drugs and their data is sitting there waiting to be examined. At the stroke of a key, researchers could analyse the effects of these drugs and test whether there is a correlation between their usage and the prevalence of all these killer diseases.
At the stroke of a key, researchers could analyse the effects of these drugs and test whether there is a correlation between their usage and the prevalence of all these killer diseases
And when it comes to rare diseases, researchers can use data to elicit what innovations have taken place at a local level and derive proofs of concept to test further any new interventions that may make a difference in outcomes.
So data sharing works at both the mass disease and rare disease ends of the spectrum.
I’m already sharing my data. Many type-1 insulin dependent diabetics are running a patient-led hack. We combine our insulin pumps which have a Bluetooth facility, with our constant glucose monitoring (CGM) systems. Our CGMs read our blood glucose levels allowing us to see what our scores are and to adjust manually our insulin doses in real time. It’s time consuming and a constant worry – human error leads to life-threatening hypo- and hyperglycaemia.
But by working together, and sharing data, we techie diabetics (techa-betics or dia-techies? Trademark pending) have worked a hack whereby our CGMs automatically speak to our insulin pumps and adjust our doses for us, leaving us free to carry on as normal without having to intervene every five minutes. It’s changed my life. (For those in the know, my A1C has reduced from 6.2 per cent to 5.4 per cent in less than a year).
The risks are minimal. Yes, a research company wanting to save my life may need to buy my data. They may make a profit, too, as they do with all drugs. Good – have at it – find me a cure.
And the risks of someone stealing my health data (and doing what with it?) are infinitely less than the risks of going blind, living my last years on dialysis, and with a double amputation of my lower limbs (all very common effects of type-1 diabetes).
I have no truck with anyone telling me, from the position of perfect health, what is in my interests. And certainly not from anyone using Facebook or Gmail. We take calculated risks everyday, when we cross the road to buy food, when we walk down the street with our phone in our hand, when we get in a car. We do so because the benefits outweigh the potential harms. ®
Cast your vote below. We'll close the poll on Thursday night and publish the final result on Friday. You can track the debate's progress here.