Skip to content
design lab #wearenotwaiting nightscout openaps

How DIY Designers are Impacting Healthcare

How DIY Designers are Impacting Healthcare

How DIY Designers are Impacting Healthcare

#WeAreNotWaiting is the social media movement of folks in the diabetes community who have come together to hack their own health; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing, commercial products to help people with diabetes better utilize technology and health data for improved outcomes. And they are organized; in the form of groups such as Nightscout and OpenAPS,  these people have emerged as design leaders in the global DIY diabetes community.

I hosted a panel discussion at Design Forward in October to learn more about the #WeAreNotWaiting movement – how real people are really being impacted – and how commercial companies are responding. Panelists included OpenAPS founder Dana Lewis; DIY family patient member Clayton McCook; and Tandem Diabetes Chief Commercial Officer Brian Hansen.


Image: L to R: Steph Habif, Dana Lewis, Clayton McCook, Brian Hansen.

How does someone begin hacking their health?

Dana, who lives with Type 1 diabetes, began by talking with the technology manufacturers a few years ago. She had a very real problem: the alarms on her insulin pump were not loud enough to wake her during night time sleep. Meaning, if her blood sugar dipped to lethal levels while she was sleeping, she would not hear the alert. And there was no way to increase that noise on her pump at that time. Dana went to the commercial companies, “What can you do, can you make it better?” She said the responses she received included,  “It works for most people” and “we are working on the next version which should be available in a few years.”

Afraid she might die while she was waiting, Dana looked to social media. Turns out she wasn’t the only one who needed better personalization from her technology. She discovered a few other people living with diabetes had solved this problem by hacking into commercially available systems. Dana reached out and they shared and continued to refine code so that they could write their own scripts for how their systems work. Separate from commercially available systems. Separate from the FDA.

What she experienced was significant improvements and stability in her blood sugars.

BEFORE:


Image: Dana’s blood glucose readings using a commercial system

AFTER:


Image: Dana’s blood glucose readings using a DIY system


Image: Dana’s OpenAPS “rig”

Why are families choosing to use non-FDA approved devices?

When your child is diagnosed with Type 1 diabetes, you “spend the first few years in a fog, trying to learn everything and all the math required to keep your kid alive,” said Clayton. His daughter Lily was diagnosed at age three and is now nine years old. “We started off with one commercial product that worked fairly well, but when Lily wasn’t near us – at school or at the park – we didn’t know what was happening. Nightscout developed a system that enables parents or any caregiver to monitor a loved one with diabetes from afar. When I learned that, I knew I had to have it.”

“There is a lot of encouragement in the #WeAreNotWaiting community. At the core is altruism.”

Clayton further explained, “I was really scared. I’m not an engineer, I’ve never written a line of code, I still find my mind boggled with all of the amazing work happening. Dana and the rest of the community was so supportive; and now my daughter finds herself in range 90% of the time. She’s happy, she’s healthy, and when she goes to school I don’t worry about her.”


Image: Lily, Clayton, Olivia, and Cindy McCook. The McCooks are active members of the #WeAreNotWaiting movement.

How are commercial diabetes companies responding to the DIY community?

“As the commercial guy,” said Brian, “I like what Dana and the community are doing because it puts pressure on us, it puts pressure on the FDA to get there faster. This is raising the bar for what we have to design and bring to market as fast as possible. There is no space in healthcare more passionate than the diabetes space.”

One differentiator between the DIY community and commercial companies is on-demand customer support. “We have a 24/7 support system available to the patients who use our devices” confirmed Brian.

“I know that the community wants us to open our systems; the newest commercially available systems cannot be customized by DIY users. As an FDA approved device, we can’t do that.”


Image: Tandem Diabetes X2 insulin pump

What about the FDA?

OpenAPS and Nightscout regularly communicate with the FDA. Dana explained, “We have talked with them and they understand why we are doing what we are doing.”

The #WeAreNotWaiting community is not doing anything commercial. No money is changing hands. And the FDA serves to regulate commercial activity.  Related to this movement, the FDA has decided to exercise something called “enforcement discretion.” So when people hack their own health technology to change the system, they remove themselves from the protection of the FDA.

One thing is certain: the next few years will reveal which commercial companies can catch up to the customization experience a DIY system provides. Those companies will win.

By, Steph Habif

*The author does formal work with UCSD Design Lab, and Tandem Diabetes.

#WeAreNotWaiting is the social media movement of folks in the diabetes community who have come together to hack their own health; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing, commercial products to help people with diabetes better utilize technology and health data for improved outcomes. And they are organized; in the form of groups such as Nightscout and OpenAPS,  these people have emerged as design leaders in the global DIY diabetes community.

I hosted a panel discussion at Design Forward in October to learn more about the #WeAreNotWaiting movement – how real people are really being impacted – and how commercial companies are responding. Panelists included OpenAPS founder Dana Lewis; DIY family patient member Clayton McCook; and Tandem Diabetes Chief Commercial Officer Brian Hansen.


Image: L to R: Steph Habif, Dana Lewis, Clayton McCook, Brian Hansen.

How does someone begin hacking their health?

Dana, who lives with Type 1 diabetes, began by talking with the technology manufacturers a few years ago. She had a very real problem: the alarms on her insulin pump were not loud enough to wake her during night time sleep. Meaning, if her blood sugar dipped to lethal levels while she was sleeping, she would not hear the alert. And there was no way to increase that noise on her pump at that time. Dana went to the commercial companies, “What can you do, can you make it better?” She said the responses she received included,  “It works for most people” and “we are working on the next version which should be available in a few years.”

Afraid she might die while she was waiting, Dana looked to social media. Turns out she wasn’t the only one who needed better personalization from her technology. She discovered a few other people living with diabetes had solved this problem by hacking into commercially available systems. Dana reached out and they shared and continued to refine code so that they could write their own scripts for how their systems work. Separate from commercially available systems. Separate from the FDA.

What she experienced was significant improvements and stability in her blood sugars.

BEFORE:


Image: Dana’s blood glucose readings using a commercial system

AFTER:


Image: Dana’s blood glucose readings using a DIY system


Image: Dana’s OpenAPS “rig”

Why are families choosing to use non-FDA approved devices?

When your child is diagnosed with Type 1 diabetes, you “spend the first few years in a fog, trying to learn everything and all the math required to keep your kid alive,” said Clayton. His daughter Lily was diagnosed at age three and is now nine years old. “We started off with one commercial product that worked fairly well, but when Lily wasn’t near us – at school or at the park – we didn’t know what was happening. Nightscout developed a system that enables parents or any caregiver to monitor a loved one with diabetes from afar. When I learned that, I knew I had to have it.”

“There is a lot of encouragement in the #WeAreNotWaiting community. At the core is altruism.”

Clayton further explained, “I was really scared. I’m not an engineer, I’ve never written a line of code, I still find my mind boggled with all of the amazing work happening. Dana and the rest of the community was so supportive; and now my daughter finds herself in range 90% of the time. She’s happy, she’s healthy, and when she goes to school I don’t worry about her.”


Image: Lily, Clayton, Olivia, and Cindy McCook. The McCooks are active members of the #WeAreNotWaiting movement.

How are commercial diabetes companies responding to the DIY community?

“As the commercial guy,” said Brian, “I like what Dana and the community are doing because it puts pressure on us, it puts pressure on the FDA to get there faster. This is raising the bar for what we have to design and bring to market as fast as possible. There is no space in healthcare more passionate than the diabetes space.”

One differentiator between the DIY community and commercial companies is on-demand customer support. “We have a 24/7 support system available to the patients who use our devices” confirmed Brian.

“I know that the community wants us to open our systems; the newest commercially available systems cannot be customized by DIY users. As an FDA approved device, we can’t do that.”


Image: Tandem Diabetes X2 insulin pump

What about the FDA?

OpenAPS and Nightscout regularly communicate with the FDA. Dana explained, “We have talked with them and they understand why we are doing what we are doing.”

The #WeAreNotWaiting community is not doing anything commercial. No money is changing hands. And the FDA serves to regulate commercial activity.  Related to this movement, the FDA has decided to exercise something called “enforcement discretion.” So when people hack their own health technology to change the system, they remove themselves from the protection of the FDA.

One thing is certain: the next few years will reveal which commercial companies can catch up to the customization experience a DIY system provides. Those companies will win.

By, Steph Habif

*The author does formal work with UCSD Design Lab, and Tandem Diabetes.

#WeAreNotWaiting is the social media movement of folks in the diabetes community who have come together to hack their own health; they’re developing platforms and apps and cloud-based solutions, and reverse-engineering existing, commercial products to help people with diabetes better utilize technology and health data for improved outcomes. And they are organized; in the form of groups such as Nightscout and OpenAPS,  these people have emerged as design leaders in the global DIY diabetes community.

I hosted a panel discussion at Design Forward in October to learn more about the #WeAreNotWaiting movement – how real people are really being impacted – and how commercial companies are responding. Panelists included OpenAPS founder Dana Lewis; DIY family patient member Clayton McCook; and Tandem Diabetes Chief Commercial Officer Brian Hansen.


Image: L to R: Steph Habif, Dana Lewis, Clayton McCook, Brian Hansen.

How does someone begin hacking their health?

Dana, who lives with Type 1 diabetes, began by talking with the technology manufacturers a few years ago. She had a very real problem: the alarms on her insulin pump were not loud enough to wake her during night time sleep. Meaning, if her blood sugar dipped to lethal levels while she was sleeping, she would not hear the alert. And there was no way to increase that noise on her pump at that time. Dana went to the commercial companies, “What can you do, can you make it better?” She said the responses she received included,  “It works for most people” and “we are working on the next version which should be available in a few years.”

Afraid she might die while she was waiting, Dana looked to social media. Turns out she wasn’t the only one who needed better personalization from her technology. She discovered a few other people living with diabetes had solved this problem by hacking into commercially available systems. Dana reached out and they shared and continued to refine code so that they could write their own scripts for how their systems work. Separate from commercially available systems. Separate from the FDA.

What she experienced was significant improvements and stability in her blood sugars.

BEFORE:


Image: Dana’s blood glucose readings using a commercial system

AFTER:


Image: Dana’s blood glucose readings using a DIY system


Image: Dana’s OpenAPS “rig”

Why are families choosing to use non-FDA approved devices?

When your child is diagnosed with Type 1 diabetes, you “spend the first few years in a fog, trying to learn everything and all the math required to keep your kid alive,” said Clayton. His daughter Lily was diagnosed at age three and is now nine years old. “We started off with one commercial product that worked fairly well, but when Lily wasn’t near us – at school or at the park – we didn’t know what was happening. Nightscout developed a system that enables parents or any caregiver to monitor a loved one with diabetes from afar. When I learned that, I knew I had to have it.”

“There is a lot of encouragement in the #WeAreNotWaiting community. At the core is altruism.”

Clayton further explained, “I was really scared. I’m not an engineer, I’ve never written a line of code, I still find my mind boggled with all of the amazing work happening. Dana and the rest of the community was so supportive; and now my daughter finds herself in range 90% of the time. She’s happy, she’s healthy, and when she goes to school I don’t worry about her.”


Image: Lily, Clayton, Olivia, and Cindy McCook. The McCooks are active members of the #WeAreNotWaiting movement.

How are commercial diabetes companies responding to the DIY community?

“As the commercial guy,” said Brian, “I like what Dana and the community are doing because it puts pressure on us, it puts pressure on the FDA to get there faster. This is raising the bar for what we have to design and bring to market as fast as possible. There is no space in healthcare more passionate than the diabetes space.”

One differentiator between the DIY community and commercial companies is on-demand customer support. “We have a 24/7 support system available to the patients who use our devices” confirmed Brian.

“I know that the community wants us to open our systems; the newest commercially available systems cannot be customized by DIY users. As an FDA approved device, we can’t do that.”


Image: Tandem Diabetes X2 insulin pump

What about the FDA?

OpenAPS and Nightscout regularly communicate with the FDA. Dana explained, “We have talked with them and they understand why we are doing what we are doing.”

The #WeAreNotWaiting community is not doing anything commercial. No money is changing hands. And the FDA serves to regulate commercial activity.  Related to this movement, the FDA has decided to exercise something called “enforcement discretion.” So when people hack their own health technology to change the system, they remove themselves from the protection of the FDA.

One thing is certain: the next few years will reveal which commercial companies can catch up to the customization experience a DIY system provides. Those companies will win.

By, Steph Habif

*The author does formal work with UCSD Design Lab, and Tandem Diabetes.

Read Next

Opinion: The World Design Capital is more than an award. It’s a chance to solve problems.

San Diego Union Tribune Op-Ed by Tad Parzen and Eddie Matthews*
*Eddie Matthews is also a Designer-in-Residence with the UCSD Design Lab


Design and discovery are in our San Diego-Tijuana region’s DNA. We are risk-takers, a nimble community that has long fostered life-changing design and innovation to improve the world, save lives and sustain critical resources. San Diego-Tijuana has long been the epicenter of a binational design revolution.

In this inclusive spirit, a cross-border community of designers, activists and community leaders have joined together to submit the first binational bid to the World Design Organization to name San Diego-Tijuana the World Design Capital in 2024. This designation recognizes cities for their effective use of design to drive economic, social, cultural and environmental development, and showcases best practices in sustainable, human-centered policy and innovation.

Every member of this region has something to contribute and the World Design Capital will be the centralized place for these binational design contributions, making the border immaterial by making design visible.
Design Lab Michael Meyer Navy Thebridge

Design Lab Faculty Reflects on Inspiring the First Design-Thinking Workshop on a Warship

By Michael Meyer A few months ago, Naval Air Force Cmdr. Jeremy Vellon participated in a design-thinking…

Don Norman To Receive Sir Misha Black Medal

Don Norman to Receive Sir Misha Black Medal for Distinguished Services to Design Education

The Sir Misha Black Medal for Distinguished Services to Design Education for 2021 is awarded to Don Norman, Design Lab Founding Director Emeritus and Distinguished Professor Emeritus of the University of California, San Diego, USA.

He will receive the Medal at a Ceremony to be held at Imperial College London, at 6pm on Tuesday, October 19th 2021, where he will deliver a short address on his philosophy on design education.

This Ceremony will be combined with the Awarding of the 2020 Medal and the 2020 Awards for Innovation in Design Education.

The Sir Misha Black Medal honours those who have given distinguished services to design education. It was the first, and is the only, international award to do so. The Awards commemorate the work and life of the designer and architect, Professor Sir Misha Black, whose pioneering work played a crucial role in the development of design in Britain.
Sd Design Trek Ucsd

Design Trek Brings San Diego Design Community Together

This past March, SD Design Trek took students and early-UX career professionals on a three-day showcase of design companies in San Diego to gain a firsthand look at what the local design community has to offer. The March 4 kickoff and showcase took place just down the hall from the Design Lab, in Atkinson Hall’s Auditorium. 

The event commenced with the words of keynote speaker, Amish Desai, who graduated from UCSD in 2003 with a Cognitive Science HCI degree and currently serves as the VP of Experiences at Moonshot. “[The talk] was about being design minded, in terms of design being much more than a craft and is actually a driver for business growth,” he says. “The idea is to instill some lessons I learned in the last 17 years as to why the importance of design is not just beautiful things but is also about doing experiments and making, driving cultural changes, creating experiences, analytics, and having business rigor.”
Enrique Zavala

Enrique Zavala on Empathy in Design | Design Chats


Enrique Zavala, Research Assistant at UC San Diego, speaks on the importance of being empathetic in design research.

Design Chats is a video series where we sit down with design practitioners to answer questions about how they utilize human-centered design.

View our Design Chats playlist on the Design Lab YouTube Channel

Design Lab Launches City-Wide Civic Design Challenge

Calling all entrepreneurs, designers, engineers and problem solvers!   Register for the Kickoff and Information…

Back To Top