Thanks to an exchange on Twitter, Campos now receives XML reports from his implanted cardioverter defibrillator, a Medtronic device, but the data is scrubbed and incomplete. Patient medical records are accessible to them by law, but data gathered by medical devices isn’t considered part of that record. Consequently, patients like Campos are left either in the dark or reliant upon their physicians to share data with them.
Campos pounced on Ishrak via social media, taking his perspective to Twitter where both he and Ishrak are active users.
"Using Runtastic to track progress with running; find it motivating & pushes me to improve," Ishrak tweeted on June 1, 2013.
"Thumbs up on using #mHealth apps to track progress. Thumbs down for not giving same access to patients with your devices #FAIL," Campos shot back.
Campos’ retort was followed by a few others, including user @MightyCasey who wrote "Love using device data? Imagine that those who use Medtronic devices would love using theirs."
User @sfbaywalk added, "The monthly printout from my ICD has a daily graph of time I exercise within my ideal heart rate. I am not allowed to see it."
Campos and other "quantified self" patients, those with a high level of interest in gathering and tracking their personal health or behavioral data, have been fighting for more open access to the information gathered by medical technologies. Campos in particular has taken extreme measures to understand his devices, having paid for a $2,000 training course generally reserved for device technicians in order to better understand the information gathered by his cardiac implant.
The Twitter exchange was followed by some renewed interaction between Campos and Medtronic, which have been hashing out the data-access issue for a while now.
"There’s been a team of folks at Medtronic that has been working with Mr. Campos for some time," Medtronic spokeswoman Cindy Resman told Medical Device Daily. "Mr. Campos has had the ability to receive the same data in the same format his physician receives for some time. Recently, as a result of Mr. Campos’ ongoing dialogue with the team at Medtronic, we were able to create that data in a format that he prefers and we are pleased to know it has been helpful to him."
Medtronic has made small concessions to Campos before, agreeing to send the ICD data to Campos’ doctor who can then pass it on, but the compromise hasn’t satisfied Campos’ interest in his data.
"The device is paid for and it’s part of me," Campos told MobiHealthNews. "It’s more intimate than my mobile phone."