Devices & Diagnostics

Patient’s demand for his device data leads Medtronic to uncharted territory

Heart patient Hugo Campos is finally getting a chance to speak with Medtronic face-to-face in his ongoing quest to get the raw data output from his defibrillator.

 

What do healthcare vendors like Medtronic do when a patient requests access to the raw data that his defibrillator captures?

That is the question Medtronic will be contending with Friday when officials from the Cardiac Rhythm Disease Management division meet patient-activist Hugo Campos. He has been wearing the company’s Virtuoso Dual Chamber ICD (an implanted cardioverter defibrillator) since November 2007.

For the past two years, Campos has been on a crusade to get Medtronic to give him the raw data captured by his Virtuoso ICD. When Campos contacted the company for the first time, Medtronic spokesman Steve Cragle said that the patient services rep didn’t understand that Campos wanted the raw data. Because this was such an unusual request, the rep referred Campos to his doctor.

Campos said Medtronic representatives asked him to talk to his doctor several times, and he sees a business reason for that response.

“CRDM companies rely on their relationship with doctors to sell their products. Going directly to patients can offset this balance and be seen as having a potentially deleterious effect on their business,” he said. “They are very careful to not upset the relationship doctors have with their patients.”

But Campos wanted the raw data, not the reports that his doctor gets, and only Medtronic has that. In fact, Campos bristles when asked why he wants this information in the first place.

“My doctor doesn’t have heart disease. My manufacturer doesn’t have heart disease. I do,” Campos said in a phone interview from California. “The abnormal thing would be if patients didn’t want this information. This is really about putting patients at the center of their (own) care. People can make changes to their lifestyle if they get regular bio-feedback.”

Campos has made what some would argue a risky decision in declining to be connected to Medtronic’s remote monitoring network CareLink, which can transmit ICD data to his doctor. This reporting also includes alerts about changes in a person’s health that could become serious.

“Nothing about me, without me,” Campos said.

But is he equipped to understand that data?

“Try me,” Campos said, who has attended seminars among other efforts to educate himself about his condition. “It’s not the manufacturer’s responsibility to help me understand. Give me the data and let me figure it out.”

Campos’s efforts have led to a blitz of media coverage locally and in some Brazilian publications. It appears that Medtronic started paying attention, too.

Campos said he has an all-day meeting at Medtronic’s company headquarters in Minnesota on Friday for the first time.

“Mr. Campos is an example of what we believe the patient of the future will look like — educated and empowered. As such, we are more than willing to work with Hugo and his healthcare provider to not only provide him his raw data, but to better understand the potential uses of this type of data so we may serve patient needs over the long term,” Cragle, the Medtronic spokesman, said in an email.

But Cragle also hinted at the challenges ahead.

“The question today is finding the best way to provide that data to patients in a meaningful way,” he said.

The spokesman did not address questions about how frequently this information will be provided and in what format, presumably because such questions cannot be answered, at least, not yet.

Campos too acknowledges the difficulties ahead for companies.

“I am asking for a significant shift in the way medical device companies do business,” he said.

It will indeed be interesting to see how Medtronic and other device makers boldly go where no company (or patient) has gone before.

[Photo Credit: Chaiwat]

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