Eavesdropping on the Heart: A Patient’s Campaign for Access

He was on the corner of 16th and Valencia Streets, “not a pretty place to pass out,” he says.

“My concern was not falling where people had spit! I'm facing death and I'm worried about falling where there's spit.”

He felt an urgent need to call his partner, tell him where he was. But there was no time. Campos’s brain was shutting down.

“So I leaned against the wall and I expected to fall. And then it passed. It went away.”

Campos has a genetic heart disease called hypertrophic cardiomyopathy, a thickening of the heart muscle that can prevent the heart from effectively pumping blood to the brain and body.

Luckily for Campos, his doctors were able to diagnose the disease before it suddenly killed him, as it does in many young athletes, for example. In 2007, Campos had the ICD implanted in his chest.

On that October afternoon, the device had two options: It could deliver a powerful jolt of electricity – like those defibrillator paddles you’ve seen on TV. Instead, it acted like a pacemaker, delivering small electrical pulses that coax the heart back to its normal rhythm.

The ICD probably saved his life.

“All systems are go again,” he says, recalling that moment. “You feel the blood rushing to your head. It feels great. Life feels great. It feels outstanding.”

While life-saving, the ICD comes with a downside. When the device performs its defibrillator function, the shock is powerful and can be excruciating. Some ICDs have been known to defibrillate spontaneously, an experience patients describe as traumatic.

The fear of a shock, along with the ever-present possibility of sudden heart failure and death, has changed Campos.

It’s given him a fervent desire to know, and to control as best he can, what’s happening inside his body.

Campos is a web designer, and you could describe his attitude as a Silicon Valley approach to heath: He’s had his genome sequenced. He sleeps with a Zeo sleep monitor, and goes nowhere without his FitBit pedometer. Last December, Campos photographed every morsel of food he ate, for a month, removing meat and dairy from his diet.

Campos wants the same access to what’s happening inside his ICD. He doesn’t want to have to go to his doctor for the occasional print out of his intracardiac electrogram. He wants the complete raw data, on demand.

In 2009, Medtronic, which makes Campos's ICD, told him that the data was only available through his doctor. Since then, he’s met with Medtronic officials and made his case widely in the media (including this recent Mercury News story) and online, in a widely-watched TedX talk. Another inquiry to Medtronic, in 2011 generated a similar response.

Meanwhile, other patients, like Karen Sandler, of Massachussets, make Campos’s demands look modest in comparison. A freedom of information lawyer, Sandler wants the full source code for her ICD.

“We are seeing a cultural shift,” says Paul Tang, a physician in Palo Alto who has advised the White House on health information policy.

Tang believes this whole issue of data and access is just starting to unfold.

He says soon, many more of us will have devices in our lives that can monitor our health and transmit that information to our doctors. Our iPhones can tell doctors how much we're exercising. The bathroom scale can report weight gain. Credit card companies could even tell our doctor what kinds of food we're buying.

“In the future,” says Tang, “I think we’re going to take advantage of much more of these signals that either emanate from your body, or can be determined noninvasively, and provide feedback on how the things you do in everyday life affect your health.”

Tang sees this new age of medical data as a boon for patients, a way to fully engage people in their health, so that they can see the way day-to-day decisions affect their body.

He says the The Patient Protection and Affordable Care Act, signed by President Obama in 2010, will give patients far more access to their medical data than every before.

But Campos worries that the sheer volume of new data being created, as well as the ability to remotely transmit that data directly to physicians, could end up shutting patients out of their own healthcare, even replacing traditional visits to the doctor's office.

He says unless patients start demanding full access to their medical data now, they risk being left out of the loop.

“I should be in charge of it in the same way I'm in charge of my financial information,” he says. “It’s just a matter of putting the patient in the center of their own care.”

Meanwhile, Campos’s ICD crusade seems to be working. A spokesman for Medtronic says the company is now willing to give Campos his raw data, and is working on ways to make this happen. The spokesman added that the company is willing to do the same for other ICD patients who request to see their raw data, as well.

Campos says he’ll believe it when he sees it.