Tim Omer hacked his own glucose monitor for a healthier lifestyle. Here, he tells us how, and why technology must be open and available to all if digital healthcare is to become reality.
It’s fair to say that Tim Omer is not your usual patient. Indeed, most patients usually avoid tinkering with the very equipment designed to keep them alive and well. Conservatism can best be found in hospital wards and doctor meeting rooms.
Omer, though, arguably had good reasoning for such endeavours. Describing himself as a ‘citizen health hacker’, the IT professional has had type one diabetes for over twenty years, a condition which causes him to continually monitor his blood sugar levels.
It is, as he explains to Internet of Business, a difficult and emotional condition to manage. It’s a manual process of staying on top of his blood sugar levels and administrating insulin, with the latter usually done using expensive equipment (CGM monitors themselves cost £4,000 a year to buy and maintain, and are deemed too expensive for the NHS).
Furthermore, this equipment is generally seen as being reactive in managing the illness. The patient must administer up to six times a day and follow a strict diet plan. It’s a time consuming process.
Finding himself frustrated with this laboured process, Omer has worked with the community, #WeAreNotWaiting, where technically-minded diabetes have taken it upon themselves to hack/reverse engineer their medical devices, sharing knowledge and code with everyone as a result.
The community is developing platforms, apps, cloud-based solutions and reverse-engineering existing products when needed in order to help people with type one diabetes better utilize devices and health data for improved outcomes. Some of the key products to have been played around with so far include Continuous Glucose Monitors (CGM) and insulin pumps. Other projects include ‘xDrip’, which pushes out live CGM data over the Internet, whilst some are using Raspberry Pis for OpenAPS – a new artificial pancreas system.
The citizen hacker movement has universal appeal; a previous Washington Post piece details how other tech-savvy patients have tweaked hearing aids to play music, used 3D printers to make their own prosthetics and improved breast pumps for new mothers.
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Smart watches in healthcare
Omer’s own efforts as part of this community are equally impressive; he bought an old continuous glucose monitor (CGM) and re-engineered with the communities’ xDrip project so that it communicates, via a self-built Tic Tac box receiver he keeps in his pocket, with his mobile phone and his Sony Smartwatch 3.
The total annual cost of this do-it-yourself CGM is about £1,000 – making it significantly cheaper than traditional equipment. With a couple of taps on the smartphone screen, Omer’s blood glucose level is displayed as a graph.
The app he built on his smartphone runs algorithms from the communities OpenAPS project and crunches data, pre-empting his blood glucoses trend. Notifications are sent to his smart watch every 15 minutes with potential medication adjustments. He says this makes managing diabetes much more automated – and easier.
“On pre-determined intervals, every 15 minutes, the app notifies me if I should make an adjustment to my insulin pump,” he told Internet of Business.
“So rather than me reacting to an issue – say high blood glucoses – after it has happened, the system is being proactive in notifying when to make an alteration to stop the issue from happening in the first place.
“The app does the calculation, it crunches the numbers for me, let’s me know if an action is required. It takes away the processing I have to do. One of the biggest things I’ve seen is removing my emotions from managing my condition.
“It’s not curing my condition, but its making it a lot more stable.”
Omer is working on integrating the app this with his pump. The app, which is available to download via his website, has generally seen uptake in his community circles, although Omer tells me of a parent in France that has been using it for her child’s teacher to manage diabetes whilst the child is at school.
He is keen to stress that the project remains “extremely experimental”. Nonetheless, he is keen to push that his project is about enabling others in the approaching age of self-care.
“All my code is open-source so people have taken my code and done something else with it. That’s fine, that’s the point of the community. We’re all here to produce something that other people can benefit from. None of us have an interest in 100 percent ownership.
“Diabetes is quite a balancing act…it’s one of those conditions with a lot of experts that generally don’t have diabetes,” says Omer. “The advice is usually based on what’s been taught or learnt.
“You generally find, after a number of years, that the best people to speak to about diabetes is people with diabetes, because there is no one solution fits all.”
A better management of his condition also stems from what he describes as ‘crappy’ providers, who he believes could do more to ‘free the data’ for patients.
“If you have right equipment you can actually have data point every five minutes. You get a bit of data and you can action upon that, and improve your quality of life.
“Data is really useful but we are limited to how we can access it, or no way to use on our own terms.”
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Cost, regulation and attitudes puts the brake on development
However, it’s clear that this isn’t a straightforward – and indeed Omer admits these projects are niche and driven by a select group of tech-savvy people.
When speaking with IoB, Omer admitted that there are a number of challenges, from heavy-handed regulators and spiralling device costs to patient awareness – something that was cited by London clinicians earlier this year.
Attitudes and culture are also of concern; Omer says that healthcare providers may not understand the data coming from devices like his – a continual concern around the Internet of Things – while different care paths need to be established for different patients.
It’s clear that technology is not a barrier, although Omer doesn’t hold back in criticizing medical providers.
“You’ve constantly got industry saying ‘this is what you need’, but patients are saying it’s not what we want – don’t reduce our pain, give me access to my information. Help me make better decisions.”
IoT a ‘buzzword – but an important one
With all this talk around hardware, software and connectivity, we ask Omer on how the Internet of Things (IoT) fits in the move to digital health.
After all, IoT in health can already be seen through the introduction of NHS testbeds, dissolvable sensors and the increasing usage of wearables. A recent report from Gran View Research indicates that the healthcare IoT ecosystem will be worth $409.9bn by 2022.
And while he says that IoT is a “buzzword”, he admits that the possibilities are almost endless.
“In broad terms, we’re already seeing the changes. For example, some circuity being used in this community is all hobbyist stuff, all individual elements which you could say are part of IoT ecosystem. For example, I can build a system which captures my blood sugar reading for about $30, when manufacturers are selling it for $1,000.”
He adds that cheaper – and more accessible technology – helps everyone.
“Access to components is easy and cheap, this promotes more homebrew projects. Add to this easy access to information and collaborate working and we are starting to see more projects – we will all benefit from that.
“A project as simple as displaying my blood glucose on my smartwatch has significantly improved my quality of life.”
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Quizzed on the future of healthcare, and his own project, Omer believes that he is a good example of patient empowerment, and sees a future where patient community will drive down technology costs, and access to information.
He appears to suggest too that innovation in these areas will come from technology firms and hobbyists, rather than a healthcare industry living in “medieval times”.
He’s working to a solution that will interface with insulin pump, better documentation and moving to a ‘closed loop system’ so that commands are set direct to his insulin pump. In future, he says there could be integration with HealthKit, Google Fit, healthcare systems, while geotagged information could be utilized. There would also be the opportunity for historical analysis, such as calculating your hourly insulin sensitivity.
Naturally, he believes that a lot of this is facilitated by open data, with a ‘domino’ effect pushing vendors to move away from proprietary solutions. But citing Medtronic deal with IBM Watson, he says patients must be included, and not feel like they’re being taken advantage of.
“From patient perspective, the majority of us don’t care what happens to our data, as long as the end results benefit us and we also have that access”
“I want my data to work better for me,” he says, adding that he’s not opposed to commercial usage, so long as he doesn’t feel he’s being taken advantage of. “I think you’re going to see patient leveraging DIY projects that caters to them.”
Tim Omer is speaking at the Internet of Healthcare in London on the 21-22 September, the leading European summit examining how the Internet of Things is supporting clinicians to improve efficiency and raise the quality of care.
Through real-life case studies, workshops and roundtable discussions, explore the future of healthcare alongside pre-qualified healthcare leaders– including NHS England, WHO, Dubai Health Authority, and more.