A Heart Patient's Quest for Full Access to His Medical Data

By Eve Harris

Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he wrote, “Just had the biggest arrhythmia ever. I'm trying to recover from the scare. I might go into the ER. I'll keep you posted.”

Arrhythmia is when a heart unpredictably beats in an irregular rhythm. For Campos it’s a symptom of an inherited heart condition. If the arrhythmia goes untreated his heart could stop beating, putting him at risk of sudden cardiac arrest.

For many patients, the best treatment for arrhythmia includes an implantable cardioverter defibrillator or ICD. The ICD monitors the heartbeat and can jolt the heart back into a normal rhythm if necessary. Campos got his ICD in 2007 and his device is part pacemaker, part gentler pulses of electricity. The response of the device depends on the type of arrhythmia he experiences. In either case, the day of our cancelled interview, the ICD may well have saved his life.

The arrhythmia episodes, or “events,” are sporadic and frustratingly unpredictable. When this event came the 46-year-old Oakland resident was working in his home office. The first thing he did -- before he called 9-1-1 was tweet his followers. Then he kept tweeting. Dave deBronkart Storified Campos' dramatic and frustrating E.R visit.

“You go from feeling fine to thinking you’re going to die,” Campos said after the crisis passed. “It’s emotionally exhausting and traumatic.”

Some doctors convey an attitude of “you can’t really have control over it anyway, why stress yourself out trying to figure out what causes these arrhythmias?” Campos says. But he embraces the “e-patient" approach -- the "e" in this case is for patients who are engaged and empowered -- and uses technology and social media to help him manage his heart condition. “Doctors come and go; I have to be on top of this,” he said.

But there's one big barrier to Campos keeping on top of his heart condition -- he cannot directly access the complex data the ICD sends out about this own heart. It's sent to his doctor first. In fact, when Campos went to the E.R. he had to wait for rep from the manufacturer, Medtronic, to "interrogate" his own device.

While respectful of his treating physicians, Campos has been outspoken in his quest for timely access to the information from his device. “The point is to identify if there are triggers,” he said, and try to reduce the arrhythmia events by avoiding those triggers.

Campos uses state-of-the-art gadgets to measure his sleep, activity level, blood pressure and other aspects of health. Through his own sleuthing, he determined that caffeine and Scotch whisky could throw his heart into arrhythmia. He has sworn off both.

He ensures that every impulse of his ICD is continuously collected, recorded and tracked by the device manufacturer. Although reports are immediately available to treating physicians via iPhone, Campos waits, sometimes for months, to learn how his heart is performing. Even then there is no guarantee he will get the data.

An estimated 100,000 Americans each year receive an ICD. Dr. Leslie Saxon is the founder of the Center for Body Computing at the University of Southern California, an innovation incubation center that commercializes wireless health products. Some in the medical community don’t believe patients can handle the data unless a doctor filters it first, Saxon said in a presentation at the TEDMED conference earlier this year.

But Saxon is one of a growing group of physicians exploring the possibility that ICDs present an opportunity for patients to be involved with their own health choices. In 2010 Saxon told MobiHealthNews, “I would like patients to learn their own data. We should create interesting software applications to motivate and reward patients to further connect them to doctors.” The Center for Body Computing counts as members many device manufacturers who could be well-positioned to develop such applications.

Engaging ICD patients may provide clinical benefits. “If you treat patients … in a partnership model versus a traditional paternalistic ‘I’ll tell you what to do, I’m a doctor’ model," Saxon says, "then you will get a continuous flow of information about patient symptoms that you can act on."

In addition to learning which drinks to avoid, there are other reasons why Campos is so involved: monitoring his own health metrics is a coping mechanism. It helps mitigate the uncertainty of living with the risk of sudden cardiac arrest, he says. He is also a vocal advocate on behalf of patient empowerment, speaking at conferences and moderating an ICD user group.

Earlier this year, Medtronic told KQED's Amy Standen that it was willing to give Campos the raw data from his device and was working to make it happen. But, Campos has yet to see his raw data, even though he's taken special training to learn to decipher it.

In the TEDMED spotlight, Saxon called the movement to provide patients access to their health data “one of the more important civil rights issues of our era.” Two days after his most recent trip to the emergency room, Campos said, “It’s about the road, not about the destination. That’s how I look at it. Preventing arrhythmia is a destination. Creating meaning is a road."

"It’s important to live my life in a way that feels meaningful."

Eve Harris is a Bay Area writer. Check out her health blog, A Healthy Piece of My Mind.