Intellectual Property and Technology Law Clinic represents clients seeking access to their medical device data
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When he was 37, ad executive Hugo Campos suffered an unexplained syncope – a temporary loss of consciousness caused by a drop in blood pressure. Three years later, in 2007, he was diagnosed with hypertrophic cardiomyopathy, a heart muscle disease that required him to wear an implantable defibrillator.
It was the same year Apple’s iPhone came out. Interested in the latest gadgets, Campos asked his doctor how he could track his heart health by accessing the data collected by his implanted device.
His doctor told him he couldn’t — that the data was being wirelessly transmitted to the manufacturer, and monitored by the clinic, but not available to the patient.
“That made no sense to me,” Campos says. “I was irked and irritated, and thought it was ethically not right.”
Campos became an advocate for access to health data and patient autonomy, and today he and two other people who make up the Coalition of Medical Device Patients and Researchers (CMDPT) are being represented by USC Gould’s Intellectual Property and Technology Law Clinic (IPTLC) in a triennial process that culminated in April at a virtual hearing before the U.S. Copyright Office.
Every three years since 2000, parties have been allowed to petition for exemptions to the Digital Millennium Copyright Act. Established in 1998, the DMCA made it unlawful to circumvent technological measures used to prevent unauthorized access to copyrighted works including books, movies, video games and computer software.
Built into the law is the ability for a party to seek permission to, in essence, hack into certain encrypted data without liability under copyright law. In 2018, the IPTLC represented farmers to help them avoid violating copyright law when they broke encryption on equipment they owned in order to repair it.
The clinic, led by Jef Pearlman, a clinical assistant professor of law, will seek a renewal of an exemption first granted in 2015 concerning medical devices, but with language that broadens the exemption to include non-implanted devices and to allow third parties to assist patients with accessing their data.
2L Kate McClellan and 3L Keon Zemoudeh testified on behalf of the CMDPT at the April 8 hearing.
“I appreciate the real-world experience of working through this project,” McClellan says. “We had to do a ton of research. I was overwhelmed at first, but I got up to speed really fast. It’s been a very valuable experience.”
Says Zemoudeh: “I also enjoyed learning about the science behind some of these devices and how researchers and patients could benefit from accessing this data.’’
Campos says despite the already successful exemptions, patients aren’t at the point yet where they can access raw, real-time data on their devices.
“But having access to this information is a matter of our rights as citizens of a free nation,” he says.
Says Pearlman of the triennial DMCA exemption effort: “It’s a weird world where patients need to ask permission from a copyright agency to access their own medical data, but we hope our efforts will help the public be able to exercise their rights to their own health information.”
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