Patterns on tap (Image: Hakan Sjunnrsson/Neurosweden)
SARA RIGGARE was listening to music when she first noticed that something was wrong.
She was 13 years old, at an event in a village in her native Sweden, listening to musicians playing Swedish folk songs. She tried to clap and stomp her feet in time with the beat, copying the rest of the crowd. But for some reason, she couldn’t quite do it right.
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At the time, Riggare didn’t know what was causing the odd disconnect between her brain and her body. Two decades years later, she finally had a name for that unsettling experience: Parkinson’s disease. Now she is part of a growing community of hackers who build their own tools to manage their health.
A complex medication regimen and the guidance of a physician have helped Riggare improve the slowness and rigidity caused by her Parkinson’s. But she hungered for a better understanding of the relationship between her symptoms, the prescriptions and their side effects. For every hour spent consulting with a doctor, she realised, there were thousands of hours that she was left to manage the disease on her own.
Quietly keeping tabs (Image: Hakan Sjunnrsson/Neurosweden)
Riggare started searching for a way to keep track of her habits throughout the day. Being a trained engineer, she used her software skills and sought funds to develop a pair of custom mobile apps. These helped her record the times of day she took her medication and track her performance in regular 30-second finger tapping tests, which serve as a quick measure of her symptoms at a given moment.
With her home-made approach, Riggare found she could easily spot patterns in her symptoms, so she was able to shift some of her daily medication times to account for low points.
“I wouldn’t be doing as well as I do today if it wasn’t for my interest in observing myself,” she says. “It’s about taking responsibility and action on your own situation.”
“I wouldn’t be doing as well as I do today if it wasn’t for my interest in observing myself”
Taking control
For Riggare and others like her, it’s all about getting better at taking care of themselves: finding ways to monitor and mitigate the quirks of long-term medical conditions. And it’s become easier than ever to concoct a customised solution since self-tracking has become more widespread in the past few years.
Gadgets like the Fitbit, Jawbone and the Apple Watch now make it easy to quietly monitor things like activity levels or heart rate. About 7 in 10 US adults already track at least one health indicator such as weight, blood pressure or sleep patterns for themselves or for a loved one, according to a Pew Research study published in January 2013.
This kind of tracking ability has especially huge potential for people with health problems, says Lesley Solomon, director of the Innovation Hub at Brigham and Women’s Hospital in Boston.
She anticipates that companies will start tapping into this potential over the next year or two. “It’s very easy now to track the things we want to track,” she says. “Imagine being able to see the ups and downs over a period – being able to track what was happening at those times and being able to have a sense of what inputs might be able to change someone’s life.”
Already a handful of medical institutions in the US have started experimenting with popular consumer tracking devices. The MD Anderson Cancer Center in New Jersey, for example, plans to give Apple Watches to 30 people with breast cancer to monitor their sleep and exercise. And Massachusetts biotech company Biogen is trialling Fitbits for people with multiple sclerosis.
But some people, like Riggare (above) find that the available, one-size-fits-all tools don’t quite align with their needs and experiences. Now a graduate student at the Health Informatics Center at Karolinska Institute in Sweden, Riggare is studying how to build better tools for people with chronic diseases, and tests out her ideas with a group of 10 people who have Parkinson’s. Even while focusing on a specific condition, she says it’s still tricky to build something useful, because symptoms can vary widely from one person to the next. “The killer app for Parkinson’s probably doesn’t exist,” she says.
For people with diabetes, hacks for continuous glucose monitors have popped up to create the features that people wished they had. One programmer made an app that let him keep tabs on his young son’s stats from his phone. Another app, nicknamed the Nightscout Project, lets others check in from a phone, computer or even smartwatch. There’s also (“do it yourself pancreas system”), built by the loved one of someone with diabetes, which crunches a glucose monitor’s latest numbers and suggests an insulin or sugar correction.
“One parent made an app to monitor his young son’s glucose stats from his phone”
Making connections
Others are searching for ways to streamline tracking for people who are less familiar with technology. Katie McCurdy, a user experience designer in Vermont, started out with simple tools like a hand-sketched timeline and a colour-coded spreadsheet to represent the ups and downs of her myasthenia gravis, a chronic autoimmune disease. She says this has helped her pinpoint factors, such as antibiotics and certain foods, that aggravate her symptoms.
Now, McCurdy has partnered with New York City start-up Open mHealth to build a platform called Linq. The idea is to help people with different conditions track aspects of their lives and share their data easily with doctors. Living with her condition, she says, has given her a unique perspective on what someone might want from such a tool.
“Some product developers are trying to make things for everyone, like a Jawbone,” she says. “Patients have specific needs that go beyond what everyone might need to see.”
On Linq, people can upload data from whatever app or wearable they prefer; the software sorts and visualises their numbers for the doctor to review. That way, people have the freedom to track themselves in the manner that’s easiest for them, while clinicians don’t have to worry about sorting through reports from different devices. Linq’s trial kicked off earlier this year at the preventative cardiology clinic at Stanford University School of Medicine in California.
Paul Abramson, a physician at the University of California, San Francisco, encourages some of his patients to try tracking, even bringing in coaches to help them do it right. He prefers using an app called Mymee, another developed by people with personal experience using tech to “debug” their health conditions. It is a flexible tool that lets users and doctors choose what they track and how they do it.
Abramson says it can make people more aware of their lifestyle and the impact that it has on their illness, as well as helping them spot connections they had never noticed before.
“It gives them some power to figure things out on their own,” he says.
Open my heart
Hugo Campos in Oakland, California, tracks his lifestyle to suss out things that exacerbate his heart problems. Now, for example, he knows to avoid scotch whisky because, for him, it triggers an irregular heartbeat.
But Campos has spent years fighting to access a richer source of data: the defibrillator implanted in his chest. The device, which he has had since 2007, amasses information on his cardiac rhythms, arrhythmias and fluid retention – as well as its own function. But only his doctors and the company that made the device could access those reports. He has lobbied the FDA for the right to open that data up to people like himself.
When Campos lost his health insurance, before the passage of the Affordable Care Act, he worried about what would happen if his implant stopped functioning. Frustrated, he took matters into his own hands and brought a pacemaker programmer, an FDA-regulated device not generally available to the public, on eBay. He also took a class on cardiac rhythm management. For months, he relied on the device to ensure that the implant was working properly – he could check in on it, tweak its settings, or even shut it off.
Now Campos is insured again, with a doctor to monitor his condition, he says he’s put away the programmer. Still, he can’t quite bear to get rid of it, in case he needs it again one day.
“You don’t drive a car without a dashboard,” he says. “You have to have information to make decisions. It’s cruel to expect a patient to make decisions about their life without providing them with access to their data.”
This article appeared in print under the headline “The health hackers”
