Mercury News: Man with defibrillator wants to know what his heart is saying
By Lisa M. Krieger
Posted: 01/29/2012 03:28:34 PM PST
Updated: 01/30/2012 03:07:20 AM PST
Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.
All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.
But Campos had to step onto a national stage in his fight to see the data his body produces.
His David-and-Goliath campaign puts him on the leading edge of what’s called the “e-patient movement” — “engaged, equipped and enabled” — that seeks to harness data so patients can learn more about their bodies.
“It’s mine. I paid for it. It’s in my body,” asserts the tech-savvy 45-year-old, who since his sudden collapse at the Fruitvale BART station four years ago has devoted himself to studying cardiology textbooks, attending device symposiums and scheming how to access the electronics of his tiny defibrillator.
“I have a right to my own damn data,” he said.
The information could help him take control of his health, said the Brazilian-born graphic artist.
Already he discovered — using an online spreadsheet accessible from his iPhone — that caffeine and Scotch trigger irregular heartbeats.
But it would be far better to have raw, real-time data, he said.
Federal law entitles patients to easy access to their health records, including X-rays and pathology reports.
But implanted defibrillator data is
different. The information stays with manufacturers, who use it to monitor and improve their products. And it comes in a format that is not easily understood. Patients can get only interpreted data, not the raw data.
“It’s just wrong,” Campos asserts. “We get all our financial data — why is it different with health care? Patients should be empowered to take care of their lives.”
Deluge of interest
Each year, hundreds of thousands of Americans are implanted with small battery-powered electrical impulse generators, such as pacemakers, loop recorders and cardiac defibrillators.
The devices are critical for people like Campos, whose irregular heartbeat threatens sudden cardiac arrest. They also wirelessly transmit data to bedside monitors, and then over a telephone line to the manufacturers.
Much of the collected data — such as average heart rate, fluid accumulation, atrial arrhythmias — is diagnostic.
But these devices also collect huge amounts of proprietary information, such as wiring breakdowns, battery voltage and the time it takes to release a shock.
Calls and emails deluged him after an online video of last November’s TEDxCambridge speech went viral. He has also testified before the U.S. Food and Drug Administration and been featured on National Public Radio.
He’s started a blog, founded an online “Implantable Cardioverter Defibrillators (ICD) User Group” and embraced a new world of patient advocacy through social media. He’s even written a protest song inspired by Malvina Reynolds’ “It Isn’t Nice.” (“It isn’t nice to grab my data, from my implantable device. Then to hog it, keep it from me. That’s not right, I’ve told you twice. It isn’t nice.”)
To prepare himself to understand the device and its data, he earned a certificate from the Arrhythmia Technologies Institute. “Patients need to educate themselves,” he said. “It really is the only way to get a proper seat at the table.”
In an effort to better understand their construction, he’s bought 19 different used devices on eBay, storing them in velvet sacs in a gold-decorated box.
“He is a pioneer. He’s an articulate visionary who sees what is possible and expresses it as common sense,” said Dave deBronkart of Nashua, N.H.
DeBronkart is a kidney cancer survivor who launched a right-to-information campaign after discovering that his hospital had exported a Google personal health record riddled with inaccuracies and omissions.
Campos’ campaign has a professional supporter.
“It is embarrassing to leave our patients in the dark, by design or technological necessity,” wrote Dr. David Lee Scher in his blog. The former cardiac electrophysiologist founded DLS Healthcare Consulting, which advises digital health companies.
He cautions that the data is very technical, even for physicians, and often irrelevant. He urges patients and physicians to work together on a solution.
The concept of “open access” is gaining tradition in the medical device world. The Palo Alto startup Glooko, for instance, sells diabetics a $40 cable that connects glucose meters to iPhones. Meter readings are automatically downloaded, so patients can constantly monitor their blood-sugar levels.
But so far, the billion-dollar ICD industry has been cool to Campos’ campaign.
The device is implanted for the therapy it delivers, not the information it gathers, manufacturers told Campos. They worry that patients unable to interpret the raw data might become alarmed.
One manufacturer is aware of the building controversy.
“Medtronic is looking into ways to provide patients with meaningful and actionable information with regard to their implantable devices,” said spokeswoman Kathleen Janasz. “We will take all of this feedback into consideration as we move forward in assessing the most appropriate solution.”
In resistance, Campos has decided on a risky political act, rejecting his remote monitor.
“I will not be monitored remotely unless I’m part of the loop,” he asserts.
But new allies have rallied to him: hackers.
More than a dozen engineers have volunteered to help him tap into the wireless system and unlock the data.
“I’ll get it,” he said, “one way or another.”
Contact Lisa M. Krieger at 408-920-5565.
For more information
Scan this code with a smartphone to see Campos’s speech at the TEDxCambridge conference.
Find a users’ group for people with implantable defibrillators like Campos’s. http://icdusergroup.
Hear an On the Media report about Campos: http://www.onthe