Strong patient voices at ETC

-Remote malicious attackers, software flaws, and privacy concerns are the potential inadvertent side effects of telemedicine, says Marie Moe researcher with a PhD in information security and also life- dependent on her implanted pacemaker.  -We would like to show the world that we are impatient!, says Christer Jensen Founder of Nightscout Norway. His organization of volunteers are encouraging and supporting the creation of open source technology projects to enhance the lives of people with Type 1 Diabetes. You meet them both in ETC session Patient Experience for an interesting conversation about engagement, involvement and the future of telemedicine.


Photo: Marie Moe (left) Christer Jensen (right)

Remote monitoring capability
Marie Moe cares about public safety and securing systems that may impact human lives and is currently doing research on the security of her own personal critical infrastructure, an implanted pacemaker that is generating every single beat of her heart. – My pacemaker has a remote monitoring capability. I was not informed about this by the healthcare professionals, so I was surprised when I discovered this by studying the technical manual after I got the implant. I recognize that this functionality can be very beneficial to many patients who require frequent check-ups, but with connectivity comes vulnerability. As a security researcher, I see this as an increased attack surface that possibly could be exploited by hackers. When I searched for more information about the cybersafety of my implant, information was not available from the device manufacturer and the answers I got from healthcare professionals were not satisfying.

Cybersecurity challenges
She decided to start a pacemaker hacking project and joined the grassroots organization “I Am The Cavalry”. The advocacy group “I Am The Cavalry”, has published a “Hippocratic Oath for Connected Medical Devices” with five foundational principles to meet the cybersafety challenges in this domain.  -With the medical “Internet-of-Things”, the intersection of patient care and connected technology introduces new classes of accidents and adversaries that must be anticipated and addressed proactively. Remote malicious attackers, software flaws, and privacy concerns are the potential inadvertent side effects of telemedicine. The once distinct worlds of patient safety and cybersecurity have collided, and patient safety issues can be caused by cybersecurity issues. Capabilities meant to improve or save life, may also harm or end life, says Moe.

Freedom for families with a Diabetes 1 child

Christer Jensen is founder of Nightscout Norway and a Phd Candidate in Medical Physics. Christer’s daughter got Diabetes Type 1 in December 2014, and his goal has been to use technology to improve her daily life. Nightscout is an open source, DIY project that allows real time access to continous glucose monitoring data via personal websites, smartwatch viewers, or apps and widgets available for smartphones. -The Nightscout project has given these parents – and their child with diabetes – freedom that they have never experienced before. It is just one more step toward living life without diabetes, says Christer. The Nightscout project enables the parents to view their child’s glucose level while the child is at school, at daycare, playing sports, at a sleepover, or while traveling overseas.

Advocates for expanding existing technology
The Nightscout Foundation is developed, maintained, and supported by volunteers to encourage and support the creation of open source technology projects to enhance the lives of people with Type 1 Diabetes and those who love them. This includes fundraising, advocacy, and direct software and hardware development. They use social media to communicate and are famous for their hashtag #wearenotwaiting, which explains well the motivation behind their organization: they advocates for the expansion of existing technologies to make life better for people impacted by Type 1 Diabetes.