Health hacker urges patients to take control of their own data

Health hacker urges patients to take control of their own data

Health hacker urges patients to take control of their own data
Health hacker urges patients to take control of their own data

Speaking at the Internet of Healthcare conference in London today, citizen hacker Tim Omer explains why patient empowerment through technology and data is essential.

Tim Omer is a type-one diabetic. He has been for over 20 years. This means he has a constant need to keep his blood sugar levels under tight control. To do so, he must keep track of numerous data points.

His diet, for example, is of crucial importance. He must know the volume of his carbohydrate intake and how long these foods are active for in the body. He must track if he’s ill and when he’s exercising, just to maintain control.

For Omer and many other patients, this is a constant struggle. There is no previous data to work from, as every diabetic patient is different and will be affected by different things. So thinking about these different data points can be a heavy burden.

‘Unrealistic’ healthcare expectations

Typically, diabetics take four insulin injections a day, one that should last 24 hours and one after every meal. Some technology has emerged that can aid this process, but it is too reactive for Omer. At present, technology, such as Continuous Glucose Monitors (CGMs) – a small wearable that tracks glucose levels throughout the day – notifies patients if their glucose levels are too high or too low, but that happens after the fact.

In his opinion, the expectation on the patient is also unrealistic. This is the key limitation with technology in the healthcare sector – the tech is ready, but the patient is not. Diabetic patients lead regular, busy lives like most of us.

“What use is real-time information if I can’t access it real-time?” asked Omer. “We’re too reactive, and we’re not being proactive enough with the data.”

According to Omer, patients are frustrated with getting new technology that is beyond their financial means or too complicated to use. (CGMs are roughly £4,000 a pop.) Instead, he believes patients simply want more control. This means they won’t wait to be able to pay for new technology every few years, they won’t want to wait to be able to access their own data, and they’re not going to wait for the cure.

Taking back control with tech and data

Omer is in favor of open-sourcing the problem. A ‘citizen health hacker’ himself, he has worked with the community, #WeAreNotWaiting, where technically-minded diabetics have taken it upon themselves to hack/reverse engineer their medical devices, sharing knowledge and code with everyone as a result.

To control his own diabetes, Omer bought an old 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.

This app notifies him when he needs to make an adjustment before his blood sugar levels are too high or too low. “It’s about being proactive and using data better,” Omer said. For the first time in 22 years, he doesn’t have to think about his condition.

Related: Meet the man who hacked his own glucose monitor

For Omer, this kind of empowerment through the Internet of Things (IoT) should be available to all patients. He feels the progress of the #WeAreNotWaiting community will not stop, as access to cheap technology gets cheaper and the community of like-minded individuals who want to understand, adjust and manage their condition, expands.

Omer wants diabetic patients to be open to discussing new ideas, and open to scrutinizing their condition, but it seems that this should extend beyond this community. Where healthcare professionals are not able to pick technology up quick enough, due to financial constraints or simply time, patients could benefit from being open to new technologies, and being willing to take control themselves.

Related: Microsoft, MIT partner for IoT-enabled wearable tattoo