skip to Main 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

UC San Diego Health Launches New Center To Spur Patient-Centered Technologies

UC San Diego Health Launches New Center to Spur Patient-Centered Technologies

On behalf of UCSD Design Lab and the Center for Health Design, we’re excited to support the launch of this collaborative innovation ecosystem designing healthcare with our community. From tele-monitoring patients with diabetes to using artificial intelligence to prevent sepsis, the newly launched Center for Health Innovation at UC San Diego Health will seek to develop, test and commercialize technologies that make a real, measurable difference in the lives and wellbeing of patients.

The new Center for Health Innovation will be located on the La Jolla campus of UC San Diego. Collaborators will include the UC San Diego Design Lab, Qualcomm Institute and Jacobs School of Engineering. It is modeled after the University Health Network’s (UHN) Techna Institute, jointly located within the organization’s hospital sites and at the University of Toronto, and has designed numerous products now used in hospitals and clinics.

“Doctors, nurses and medical teams know best where there are existing technology gaps in patient care,” said Christopher Longhurst, MD, chief information officer, UC San Diego Health. “With our proximity to the health and biotech sector as well as the cross-border region, the number of collaborative opportunities are immense.”

To learn more about the Center for Health Innovation, visit healthinnovation.ucsd.edu
Announcing The New Graduate Student Specialization In Human-centered Design

Announcing the new Graduate Student Specialization in Human-centered Design

Image courtesy of Adobe Stock

Announcing the new Graduate Student Specialization in Human-centered Design in partnership with the UC San Diego Design Lab, Cognitive Science (CogSci), Computer Science and Engineering (CSE), and Herbert Wertheim School of Public Health and Human Longevity Science (HWSPH).

The Design Graduate Specialization is a set of courses graduate students can choose to take that fit into their home degree program requirements. It is analogous to receiving a minor, but at the graduate level. The courses fit into their home program as either electives or as courses that were already part of their core requirements, plus the option to take courses from other programs taking part in the specialization outside of their home program. In addition, students will be required to take at least one course that explicitly addresses and discusses issues of power, privilege, and ethical responses. The Design Graduate Specialization is created so that it can be integrated into a one or two-year Master program or a Ph.D. program.
UCSD & Design Lab Students Participate In The Civic Digital Fellowship Program

UCSD & Design Lab Students participate in The Civic Digital Fellowship Program

Irene Guo, Neve Foresti, and Eric Richards, former and current UC San Diego Design Lab students, participated in the Civic Digital Fellowship Program, a ten-week program that equips students in different fields of technology (from data scientists to designers) to utilize their technical skills for public service; these students are referred to as Civic Digital Fellows. This program is the very first of its kind, and is modeled on four principles: the fellows must be compensated for their hard work through monetary gains, they tackle work with a high impact, their professional careers are developed, and finally, their community is cohort-based. 

Don Norman debates John Maeda of Automattic, the company behind WordPress

In January, world-renown executive, designer and technologist, John Maeda, and a team of 25 people…

Productivity

Bringing Order to Chaos: How to Increase Productivity By Mastering Unstructured Time

Podcast with Design Lab member Amy Fox

In this episode we will talk to UCSD Cognitive Scientist, Amy Fox, about Structured and Unstructured time. Join us as we learn about the difference between the two, and tips and tricks that can help you organize and boost your productivity.

Triton Tools & Tidbits is a podcast that is focused on discussing topics that will engage and enrich student life and education. Brought to you by the Office of the Vice Chancellor for Student Affairs.
Subtance Addiction Digital Health

The Digital Health Landscape in Addiction and Substance Use Research: Will Digital Health Exacerbate or Mitigate Health Inequities in Vulnerable Populations?

A new paper from Design Lab member Camille Nebeker

Novel and emerging digital health technologies are increasingly used in substance use and addiction-related self-management and treatment research. The promise of digital health is exciting, yet there are important factors regarding population characteristics to consider prior to using novel technologies with vulnerable populations. This paper by Camille Nebeker, Design Lab member and UCSD Behavioral Medicine professor, and Dina Hamideh reports a review of scientific literature published between 2015 and early 2020 on the use of digital health strategies in research focused on substance use and addiction in vulnerable populations.
Back To Top