We #MakeHealth Fest 2015 & The Nightscout Symposium
THIS is the future of healthcare:
Healthcare that taps into the insights and wisdom of patients and caregivers, promotes creative solutions for healthcare, and scales innovation via a collaborative community. That’s why we are creating a Maker Movement for Health!
We #MakeHealth Fest 2015
We held the 2nd annual We #MakeHealth Fest at the University of Michigan this fall and were fortunate to have the participation of a remarkable group of individuals passionate about making and health. Here are select videos from the event:
Susannah Fox, Chief Technology Officer of the U.S. Department of Health and Human Services, spoke about her role within HHS, which is akin to a Chief Innovation Officer. She works with the IDEA (innovation, design, entrepreneurship, action) lab, which uses methods like design thinking and lean startup to bring innovation to the federal government. What was her major insight since joining?
“The opportunity that is being missed is the maker movement.”
Susannah has a deep understanding of the maker movement given her background as an “internet geologist/ anthropologist” over the last decade, conducting fieldwork and research focused on the health “hacking” done by patients and caregivers. Speaking to the makers in the audience, she said:
“If you can find the hackers, if you can find the artists, if you can find the people who make a way out of no way, then you are going to see the future. The work that you guys are doing is building the future. We need more ambassadors from the future to talk to establishment healthcare.”
José Gómez-Márquez (TED Global Fellow) returned for the Fest for the 2nd year in a row (Check out his talk from the 2014 We #MakeHealth Fest!), and described the mission of the MIT Little Devices Lab:
“How do you get more people to make stuff?”
“How do you democratize medical device design and fabrication?”
Jose talked about the importance of transparent design for health, which is design that is apparent, visible, and can be shared with a larger community. This transparency facilitates rapid and widespread modifications at scale, leading to improvements in design that can accelerate the pace of innovation.
He contrasted this transparent design with the black box design of most medical devices, which are completely shrouded in secrecy.
“We don’t understand them, they are definitely engineered so that we don’t understand them; the industrial design is housed in things that are not inviting for us to understand them…”
What are the potential negative consequences of black box design?
- Disenfranchisement of the user. Jose gave the example of modern-day farmers who are confronting black box tractor technology. Previously, when the analog tractor broke down, farmers could do their own DIY repairs to fix them (farmers are the ultimate makers!). But with the new black box proprietary computer systems, they are locked out of accessing the “guts” of their own purchased equipment, they cannot do their own simple repairs, and they are forced to work with manufacturers who charge handsomely for repairs. For farmers who do decide to hack their own equipment, despite the fact that they own the equipment, hacking might be considered a crime based on the Digital Millennium Copyright Act (DMCA). (Watch the video to also learn about the DMCA for coffee.)
- Disparities in Access. Jose talked about potential inequities in access to healthcare tools and devices, as companies begin to charge more for their “secret” black box technology: a $2 thermometer that now sells for $29; a $14 blood pressure cuff that now sells for $170; and a 50 cent pill bottle now sells for $300. If you do a tear down of many of these devices there is nothing special that justifies the higher prices of some of these products, aside from the digitization and or the fact that they link up to your iPhone. From his perspective, makers can create many of these inventions at greater scale and much lower-cost.
“Don’t give me a black box, give me a kit.”
Jose ended his talk by sharing the lab’s important work focused on the development of platforms and systems to make medical device design more transparent and accessible (learn more about the MEDIKits here). “Making” empowers users (patients/caregivers, even healthcare providers) to hack, make, and modify medical designs; through the transparent sharing of these designs, there are opportunities for empowerment, greater scale, and sustainability.
Anna Young, TEDMED 2015 Speaker, also from the MIT Little Devices Lab, described her work as co-Founder of MakerNurse, a program supported by the RWJ Foundation. She and her team have done extensive fieldwork in the area, demonstrating that nurses today and for most of the last century have been makers. MakerNurse conducted research at a number of healthcare institutions and found some remarkable maker nurses, including: Victor Ty, a radiation oncology nurse who created a Lego model of a linear accelerator to prepare and teach pediatric cancer patients about their treatments; Nicole Wooden, who created a contraption using a paper tray, a computer stand, and 3 pieces of acrylic from Home Depot to stabilize patients’ arms during catheter treatments; and Roxana Reyna, a wound care nurse in the neonatal intensive care unit, who was recently honored at the White House Maker Faire for inventing a novel wound care method for omphalocele, reducing treatment time and the risk for infections.
Both Anna and Jose are in the process of launching makerspaces for nurses in hospitals across the country to support a movement of “making” in healthcare. Learn more about their first makerspace here!
Watch the amazing work of George Albercook. He is a local maker in Ann Arbor who has been working with a boy with cerebral palsy. Check out his amazing inventions, including:
- A walker hack that stores energy using a spring.
- A contraption that makes physical therapy fun, using Minecraft, a makey makey, alligator clips, 2x4's, and 2 microphone stands.
- A wristband that gamifies the stretching tasks of physical therapy: he combined an engaging display to encourage the little boy stretch his arms, with a set of $3 accelerometers/gyroscopes that can record the angle between the forearm and upper arm to measure the stretching task, and added a bluetooth connection that communicates with a mobile phone, allowing him to earn points for his favorite games every time he accomplishes the task!
The Nightscout Symposium
The Nightscout Project, Patient-driven Innovation, and the Maker Movement
The next morning we held an academic symposium in conjunction with the University of Michigan Medical School and School of Information, featuring research (by myself and Liz Kaziunas (coming soon!)) and talks from community members from the Nightscout Project, a DIY/maker mobile technology project that has led to incredible innovation within the diabetes community.
“a little project I took on to make my son healthier, which took on a life of its own.”
As he says,
“Necessity is the mother of invention. We do what we have to do. This is what I had to do. The foundation is where I could help out.”
“It’s been an interesting dilemma to wrap a business model around something people do out of love.”
Ken Stack talked about his work as a citizen hacker in the Nightscout community, building both diabetes software and hardware systems for his son. In his talk, he discusses what has been built by the community, including mobile displays, dashboard analysis and exploration/decision-making tools, hardware, and remote control and closed loop systems.
“Nightscout was the most transformational experience we had in 10+ years in diabetes; there was nothing else that even came close. It has made all the difference.”
Weston Nordgren is the Community Evangelist and a Nightscout Foundation Board member, who talks about how his family’s life was dramatically changed when they began using Nightscout.
“We had received something back which had been taken from us.”
As a result, he and his wife along with many others have espoused the philosophy of the community:
“Pay it forward in any way that you can.”
Individuals in the community are sharing code, providing 24–7 technical guidance and support on the Facebook group, convening local meetups to get people set up with the system, forming international Nightscout Facebook groups, and even creating memes!
Nate Heintzman, PhD, is the Senior Manager of Data Partnerships at Dexcom. Nate talked about his scientific and advocacy work in diabetes and how he is working with the Nightscout community to encourage collaboration between the lead users of the Nightscout community and medical device companies like Dexcom. (We are grateful to Nate and Dexcom for their generous support of our event!)
As you can see, the Maker Movement is already transforming healthcare. Join us to reshape the future of healthcare.
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Additional links about our event can be found at our website, www.healthdesignby.us.
My Disclosures: Google Life Sciences
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