Maker Movement Brings Patients into Healthcare Design

[Mel.Captioner is Live]
DOMINIC CUSHNAN:
Welcome to this edition of Edge Talks. We are looking at the Maker movement, we're joined by Joyce
Lee who is joining us at 3:30 AM.
Dr Joyce Lee, is a social professor at the University of Michigan Medical School, School of Public
Health. She conducts clinical and outcome research focused on children with clinical obesity and
diabetes.
She provides clinical care for children with diabetes at (unknown term) Children's Hospital. She applies
the method of design through her work in health, designed by (inaudible) US.
Today we're looking forward to listening to Joyce about the Maker movement. We would like you to get
involved, there are multiple ways to do that. We have the chat box in the WebEx software, and you
can tweet us using the hashtag #edgetalks and you can copy in the Twitter handles School for
Radicals, and NHS.
If you'd like to join our community on Facebook, please send a request by looking at the School for
Health and Care Radicals, and the Edge NHS Facebook pages.
My name is Dominic Cushnan and I will be chairing the session today. On the chat room monitor we
have our lovely Carol Read.
On Twitter we have Ollie Benson, and you can follow on Ollie Benson as well. I will hand over to Joyce
Lee in one moment, but else wanted to introduce and discuss about what we're looking next time's
Edge Talks.
We have the wonderful Sue Haines and she will be talking that talent management. On 2 September
we have our lovely friend Maxine Craig who will be talking about culture and change.
I know handing over to Joyce Lee who will take us through the Maker Movement.
JOYCE LEE:
Thank you guys so much, can you hear me? I really appreciate the opportunity to speak to you guys
today, it is a little bit early where I am, but I'm excited to be as my friends across the pond. I think the
work you are doing is incredible.
In terms of my goals for today, I wanted to provide an introduction to the Make a Movement and
participatory design and the work we have been doing at the University of Michigan.
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I wanted to give you some background into the Nightscout Project, which is a living example of the
power of the Maker movement. I am a researcher focused on type I diabetes, we have been doing a
lot of research including ethnography, and also a Facebook group to try and understand this
movement that has happened bottom-up inside the diabetes community.
I wanted to open up a conversation with the community around design and making, I had a chance to
look at your slide from a recent talk at Monash University.
How do you move programs and platforms, I thought that was an interesting and timely discussion
about how we design healthcare systems.
Just to give you a little background, I do want to acknowledge my disclosures. Again, I am an
associate professor at University of Michigan. I work with children with type I diabetes, clinically.
I also do clinical research, a lot of my researchers pivoting towards implementation science and quality
improvement as we are building a system with National diabetes.
I do work in mobile technology and data visualisation, focused on diabetes, and participate a redesign
and social media.
Locally I direct quality improvement for our paediatric diabetes clinic. That gives you some background
where I am coming from. I do want to make the disclosure that I don't have any formal training in
design.
I call myself "doctor as designer" online, but how can I say that when you think about people like the
man on the left, who designed beautiful, small things like the Apple watch, health apps and things at
that.
One of the messages I have today is around the democratisation of design and that everyone can, and
should think of themselves as a designer, and that is something we should really espouse as we think
about transformation.
I want to tell you a little bit about how I came to my identity as a doctor as designer. It was a personal
design experiment that happened a couple of years ago when I went cross-country to spend my
sabbatical in the Bay Area.
I brought my two kids who have life-threatening food allergies. B has actually been to the emergency
room a number of time for anaphylaxis to dairy, eggs and peanuts. We have to carry around this epi-
pen to make sure we can basically save his life in case he has an anaphylactic reaction.
When we went over to the West Coast, we brought what is typically given to everyone, this food action
allergy plan. I would call it a design fail, because this is a really hard document to use to communicate
to a caregiver. How to save your child's life, right?
I was looking around for resources, other tools that we could use, but I just had a hard time finding

things. So I ended up getting interested in social media.
I was in the Bay Area, it is the home of Google, YouTube, Facebook. So I decided to make a little
video. I call myself a lazy tiger mother - that is my son, both of my kids play violin, not very well, but
they play.
At the time he was six years of age and is learning to read and write, and I wanted him to be part of
this process. I knew I had to communicate to his caregivers vital information about how and where to
give medication.
I also wanted him to learn from this so I could have him protect himself, as well as protecting him by
educating his teachers and caregivers. So we ended up creating a YouTube video. I cannot show it
today, apparently there is no video on WebEx.
You can go to this website, it is our little blog where we have all the information about food allergies.
And the bottom line is, what I did was I scripted it.
I walked through the types of medical content that needed to be in there, but what he ended up doing
was illustrating the entire video.
And then narrating. We did that to a series of PowerPoint with audio clips, and then doing a little bit of
screen casting. It gave not only the information about when to give the medications, it also gave
information about how to give the medications, the fact you have to call 911.
What I ended up doing was putting it online. We had just started the school year, we were just starting
to educate his teachers. We ended up sharing it with the teacher, and she ended up sharing it with
over 700 students and 40 teachers at the local school they were spending the year at, because they
had a video podcasting system.
It was interesting because I met up with some other colleagues who are interested in paediatrics and
digital health. For example, Seattle Mom, she ended up blogging that this was an example of bringing
the food allergy plan to life.
And Susannah Fox, who is now the CTO for HSS, she commented on it as a useful educational video.
It was interesting because she compared it with Mike Evans, who is one of the leaders in health
communications. I think she thought it was approachable and effective despite the production value.
So what can you do with a mom who is not a formal design and a six-year-old? I think it did its job. And
we ended up making a couple more videos.
We ran into other instances where they were having him make cupcakes, not touch them, but there
were all these allergens he was working with.
We made a part two video which was focused on food handling. We got back to Michigan in the fall of

the next, and we did a video about allergies. His asthma was acting up, and he didn't have a great
familiarity with his breathing issues.
I even did some of my own making. This was my initial prototype of when I brought the epi-pens to the
caves with the different daycare is, I had to bring some sort of physical sign.
That was a failed first prototype. I ended up turning it into a nametag which has all the information on
how to contact us, what the allergens are, links to the videos, and information about specific
ingredients they are allergic to inside the booklet.
We carry this around every time we have either a bag of the epi-pens and the Benadryl, and this is the
book that goes with it and follows them wherever they go.
The first video actually ended up getting something like over 2000 hits, and that was exciting, that was
sort of success. The bottom line is that it doesn't matter. These are the tools that we use, whenever we
start a new school, whenever we start a new camp, we have to have this information.
This was the best way for us to display it and teach it to the people that care for the kids. I don't think I
realised it at the time, I was just exploring social media, I was just trying to make tools that were
actually useful as a mom and a caregiver.
What I realised was this was really the future of health care. This idea that patients are the experts.
Like, I try to find videos online, I tried to find educational videos that suited or serve our needs. I
couldn't find anything. I noticed there was a problem.
And then we were makers, granted, this was not a physical prototype, but it was definitely a physical
one. What we were able to do was use simple tools like an iPhone to take pictures of the illustrations.
PowerPoint, audio clips, some screen casting software, it allowed us to upload and produce online so
anyone could reach it with just a click of a link.
Finally, I think this was a great collaboration between B and myself. I could have made this video with
my voice, and my illustrations, I don't think it would have been as effective.
In the process, I think he learned a lot about his disease. I think this really represents how I see the
future of health care, the patient as the expert, maker and collaborator.
When I got back to Michigan, after that year-long sabbatical, I ended up spending some time with
some colleagues from across campus.
I was with Mott Children's Hospital and ended up working with the School of Information, the School of
Design, and collaborating with individuals, patients, caregivers.
The designers, the makers, the technology experts, to explore the intersection between healthcare and

design.
We have three missions, we have been doing work together for the last three years and have three
focuses. One is education, one is to integrate design thinking into the medical enterprise and promote
the participation of makers in the healthcare landscape.
I think we see there is great opportunity in bringing people who have skills to make things inside
healthcare, which has huge, horrible, dysfunctional problems inside it.
There is great value in taking healthcare stakeholders and sharing their ideas, sharing their ideas with
the tinkerers, the makers, people who want to make things that are important, meaningful to patients
and caregivers.
In terms of research, we are partnering with patients and caregivers to create opportunities for
participatory design. I will tell you a bit more about this.
[Martin.Captioner is Live]
You will hear about that soon.
Clinically, we are very interested in providing tools for transforming patient experience. I don't know if
you guys experiences in the NHS, but generally in our system we are pretty analog in our tools and the
things we give to patients. We still print everything out. We really need more up-to-date media and
more effective ways to communicate information to our patients.
So, you know, we started out and we continue to use the principles of human centred design, which is
an approach that puts human needs and capabilities first, and then designs for ways of behaving. It is
really this process of design, understanding your user, which leads to the definition of a problem,
allows for brainstorming, and allows for iterative prototyping and testing so that we can build the right
product for the right person.
I think one of the approaches that we use – we will do this in a long, extended fashion, working on
products over months or weeks, but then we also go through that process in sort of workshops that be
run locally. Maybe point of these workshops is to really socialise design in a system that doesn't even
know what design is.
One of our guiding principles is we use the process of design to improve patient experience and
patient services. It is really the concept of participatory design. It is making sure the users are in the
room and co-create with us.
Often, healthcare providers are in the room. Healthcare administrators are in the room. But people
forget to invite patients and caregivers. It is really critical for us to have them in the room so they can
voice what the real problems are so that we understand the real problems that need to be solved
rather than the problems of the doctors or administrators.

On the left is a picture from the walls of the University of Michigan medical School. On the left you
have a scientist, on the right you have a go with diabetes, called Olivia. She was someone that, as we
were doing a workshop, we invited her older sister, and adolescent, and her mother said "Well, should
I get a babysitter for her?" We ended up saying, "Bring her with you and we will design together."
She did a fantastic job of getting into the process and even presented the prototypes to a large group
of academics and students and staff and patients.
One of the things we sort of try and emphasise is that patients and caregivers are the real experts,
they are the patients that live with the disease and understand it in a much deeper way than any
stakeholder could.
One of the things we do is we give them names out that say "expert/designer". We want to create this
culture of respect and understanding that they are probably the smartest people in the room.
We have a lot of workshops. What I try to do, as a really busy person, is multitask and insert design
into all. Opportunities that exist. A lot of that comes with boring, quotes, committee work. But why not
turn it into a design workshop if you have stakeholders coming?
We really basically just take whatever opportunity we can in the operations of health care to use
design thinking and insert it into that process.
We have also tried now to formally do some of this workshopping by collaborating with students who
are doing curricular programming. For example, we have a mini grant from the provosts where we
have them working with the lady who runs the entrepreneurship program at the Michigan University
School of information. Matt Kenyon was running an additional game design course. What we try and
do is integrate patients and caregivers into the curricular process.
In the end, the students have to make prototypes. But we had a kick-off workshop where we
introduced them to different stakeholders, went through the design thinking process in a couple of
hours, and ended up pairing up students with specific clients to develop prototypes as part of their
academic work. So there is great value because one, they need real problems to work on, things that
go beyond what could be replicated in the app store, and in the system and there's not a huge
investment locally in mobile technology and/or any technology.
So, having the opportunity to work with makers who can turn your problem into a prototype and help
you to design it is, I think, a really powerful experience for the patients and caregivers.
Then we have also done pairing up of patients and caregivers with students in more internship
opportunities.
So, just briefly, either in long or short form, what do we do? We make sure we understand the problem
before solving it. It is so important to have caregivers in the room before this happens, as they

articulate problems that are very different to what the stakeholders articulate. We want to make sure it
is a patient defined problem. We recognise that in health care delivery systems there are priorities and
competing issues, but I think we sort of use… We are very interested in letting patients drive this and
letting the process of design be a bit more arbitrary.
If somebody values this and it is important, then that needs to be addressed, as opposed to what you
might think of as the average problem or maybe the problem that comes from a different perspective,
like the healthcare system perspective.
Ideation is really important, so doing collaborative brainstorming. But also, just creating constraints that
force you to come up with a number of solutions. We spend so much time on PowerPoint and
Microsoft Word and sitting in meetings, and so the ability to sort of work with people who are
interdisciplinary, who have different backgrounds, and be forced to come up with five, 20, 50 ideas –
that really creates the opportunity for better solutions.
Prototyping. We don't really do any building inside the health care delivery system. As I will get to
making and creating, I think there is something satisfying about that. That is part of the process. Then
obviously trying to do iterative testing to try and improve the prototype over time.
This is just an example of one of the ideas that came out of our workshops. You can check it out at the
website. What happened is there was an adolescent who were sitting at our table, and she was our
patient or client, and there was a group of interdisciplinary stakeholders who were trying to understand
what her issues or needs were with regard to type I diabetes.
We ended up – she described the tension that occurs when she is trying to communicate blood sugar
to her mother, because they are doing a lot of texting back and forth of numbers. I think it just causes a
lot of stress. The group come back with this idea of diabetes emoticons.
We work with some designers to design the icons and then we were able to get the Michigan hackers
to basically build the app for free for us. What is interesting about this prototype is, you know, I'm a
diabetes specialist, and I might have said that… If you look in the App Store, there's 1000 of these
things and nobody uses them. Again, this is a great example of how the right problems get articulated
by the right users, if you focus on them.
When we did the release a couple of months ago, I think we had something like 2000 downloads in the
first like two weeks, and that wasn't even with a lot of outreach or, I guess, marketing. Today we have
something like 5000. What this speaks to is the power and the uptake of patient design, and so this is
sort of one of our first physical prototypes from some of our collaborations.
We paired Trevor, who have type I diabetes, a student at the University of Michigan, but he calls
himself a diabetes Evangelist, and he has a positive attitude. We paid him up with Jay, a comic book
artist, and they come up with this interesting comic on our website, where they talked about, where he
basically does multiple panels about the upside and downside of diabetes.

This is an important narrative. It is a gorgeous comic book, and an important tool to share with our
patients around the psychosocial living with diabetes, which is different from the mechanics of it.
Again, I don't think any healthcare provider could have come up with the type of narrative or the
beautiful design that came out of this collaboration.
Again, we have been working with students from the School of Art and design and School of
information to design more technology focused applications. For example, the one at the top is an app
that helps people when they are sick and have type I diabetes. There are issues around checking for
ketones and whatnot. Originally, there was talk of whether we should make a magnet, but that would
cost $20,000, so I sort of took that nugget and fed it to our colleagues, and now we have many more of
these, trying to bring beauty into the tools we provide for our patients.
One of our critical missions is to move away from the concept of design as a distraction from health.
We are trying to create innovative products and services that really work for our patients and their
needs.
As we were doing a lot of this design/participatory design work, I wanted acknowledge my colleague
PF Anderson, at the University of Michigan medical school library. I was aware of Makers, but she was
one of the key people who introduced me to the community.
The Maker movement is one that is gaining a lot of interest both locally and nationally, at least in our
nation. It is something that is really being espoused by the White House, by the National Science
Foundation, even by the National Institutes of Health. It is this idea… What is it? It is actually a
movement that is a DIY technology movement. The idea is that everybody is a maker. You learn by
doing. You create things yourself, right, and there is a notion that the learning is really peer to peer.
For example, if you build something, you work with individuals inside a space. Maker Works is one in
our region that is basically a place that has a lot of different tools for sharing ideas, and they can meet
up at Maker fairs to do a lot of show and tell and share ideas.
This is an example of the 1980s VCR machine that was converted into a cat feeder.
The making that most people are familiar with is the "3-D maker", which has been used to make some
innovative healthcare products. One at University Michigan was a (inaudible) for a little baby, that was
individualised, and individually made for a little child who had a collapse of his airway.
On the left-hand side, is a group of individuals that does 3-D printing for prosthetics, and they do at a
very low cost with a community of makers who want to make these products, and or for patients or
caregivers.
There are more wacky things, I love this. You can take a photo of your face and get it imprinted into
your latte.

There is this machine called the Egg Box, you can take a picture, and it will draw the profile image of
the picture onto a ping-pong ball.
Fun stuff, maybe a little frivolous, but a part of this is the idea it is fun to do, it is about tinkering,
learning, sharing, and that is part of the socialisation of the technology adaption.
Almost anything can be Makers now, there is DIY cars, DIY drones, I think part of the power of the
maker movement is the mindset. The idea that "being a maker is not taking the world as it is. Dale
Doherty is one of the founders of Make magazine.
This idea that "I can fix it, I can build it," and Chris Anderson talks about the idea that it is a movement
which is democratised technology.
And when you do that, you really liberate the ideas and creativity of the population.
We saw these links between the maker movement and participatory design. Do-it-yourself, the patient
is an expert.
Learning by doing, the patient as maker. And peer-to-peer learning, the patient as collaborator.
In the last couple of years, we have held a Make Health Fest at the University of Michigan for the last
two years. We have really pivoted towards trying to do more making that is within the community.
We have been lucky to have some leaders come to our events and help share the importance as well
as share their knowledge.
They are spearheading the health initiative creating a community of nurses that is encouraging them to
create or make tools for healthcare delivery. Susannah Fox, the chief technology officer for HHS is
spearheading, during her time in the administration, the Invent Health initiative, which is trying to help
the US government create a platform to encourage the maker movement inside healthcare.
In follow-up, we have done more programmatic work in we're trying to do more workshops and
diabetes education. We are trying to get patients to help us develop prototypes, and turn them into
videos/artefacts that we can use to do more tactile design-based learning as we educate patients with
type I and diabetes.
We have reached out to community groups, JDRF or a large group, community of caregivers for
patients with diabetes. We're lucky to have a partner with Amy Homer, she has two kids with diabetes
type I.
We have been doing a lot of workshops where we are trying to get kids to use the design process and
help us develop ideas for prototypes that need to be made for diabetes management.
We are even trying to do some work (inaudible) we have been partnering with Game Start which

teaches kids how to program through the medium of games. One of the quintessential examples, my
son has been to the classes that allow kids to play Mind Kraft, it allows them to play the game by
programming.
We're trying to take that model and introduce it into diabetes clinics. We have been building a diabetes
specific game with the input and participation of patients, and try to make it more of a peer-to-peer
experience where kids can interact with each other, learn from each other.
I think that is really important with regards to peer-to-peer support, and social management of
diabetes. Some of the insights we have developed or learned along the way, is first that we are all
designers, patients, caregivers. It is not about being anointed designer.
It is an idea that as people who live inside the system, there are huge problems that need to be solved,
and who better to understand them and us, the people who live inside the system. We really believe in
this idea that we have to design with and not for patients.
You have to bring them to the table, if their voice is not in the room you will not come up with the most
creative and innovative solutions. You will probably address the wrong problem. We have tried to
make design part of the workflow.
Whatever it is, I think it is an essential tool for health care providers, clinicians, patients and caregivers.
How do we get that as a tool we use, just like any other tool, any other method, to do our work more
effectively, but also do it with more than optimistic outlook, rather than a pessimistic outlook, which
seems to pervade health care these days.
I have been amazed at the opportunity to design with people. In hospital IT, everytime you want to do
something they say, "You cannot do that." It is incredible to work with partners who say, "That is totally
easy, we can definitely do that."
That has been really gratifying. And I think the Maker Movement is a really satisfying, extreme version
of participatory design which I want to tell you more about.
We have been doing research under the University of Michigan IRB about this project. We published in
a journal recently with some patient partners from the NightScout foundation. This is John Kostic, the
dad of a son who developed type I diabetes at age 3 or four.
When he was first diagnosed, he ended up getting a continuous glucose monitoring system. It is an
FTA approved advice.
It is not widely disseminated. In the US it is essentially about 11% of individuals with type I who use
this. It gives you a reading of blood sugar every 5 minutes.
It gives you much deeper insight into the trends, when someone is going to go high, when someone is

going to go low. It is a really essential tool for people trying to live with the disease.
In 2014, 2013, he got this device.
There was actually no way for him to get the numbers while his son was a daycare and he was at
work. The receiver had to be with the son, who had the sensor under the skin. And there was no
mobile technology solution which allowed him to capture that technology from afar.
He is a programmer, and he ended up hacking into the CGM and attaching it to a USB to an android
phone, he created a code that allowed him to pull the numbers out to an android phone, that could
take the numbers to the cloud.
He ended up creating a whole bunch of tools. A watch that would allow him to see the trend in the
number in real-time, a mobile phone with notifications, and desktop care portals where he and his wife,
and nurses could upload information about glucose.
Upload information about insulin doses, and carbs in addition to having real-time blood glucose
stream. He ended up posting this on Twitter, and there were some other individuals who saw this.
They were techy, programmer types that had children with type I diabetes and they said, "Oh my gosh,
I want that."
There were Twitter users who find a contractor in India to build his own monitoring system. Apparently
the contractor said the job was too simple, he deployed it, and said, "Pay whatever amount you would
like to pay."
What was interesting was he posted about this and social media, and another woman on Facebook
saw the post, and this individual talked about the fact how she also wanted access to this information.
Or to have access to this tool, but she did not necessarily know how to build it either. So he connected
her with his contractor in India, and she got the system for herself. So began, I guess, the bottom-up
network of early technology adapters inside this diabetes community.
There is a ton of individuals in the community that work tirelessly to allow this to spread too much
bigger group of families. Everyone who used it found it to be so useful that they felt they had to share it
with others.
It was really compelling and powerful for them, really liberating for them, now they could go out on
dates night, now they could let their kids go out for sleepovers. They felt a lot of improvements in
quality-of-life, as well as opportunities for better management of diabetes with this tool.
They opened this private Facebook group, it is called CGM in the Cloud. You can apply today and get
in. The Facebook group linked up to the Nightscout group.
It gave do-it-yourself instructions about how to set up the system for yourself.

And gave links to the code you would have to use to set up the system. It is interesting, there was a
hashtag born out of this movement called "we are not waiting", which is used quite often in the
diabetes community. This idea they were not going to wait while an endocrinologist tried to assemble
pieces of the puzzle. They were not going to wafer FTA to come up with the right solution.
They were not going to wafer device manufacturers to innovate, and they did not want to wait, they
wanted peace of mind that there are kids could be safe.
One of the mantras of the community was "pay it forward", if you were helped by this technology, then
do something for someone else, to help someone else.
This really was a bottom-up, community driven phenomenon. Essentially, what happened was not only
did the Facebook group just serve as a placeholder for people to see the link and get instructions to go
to the website, but there was a support group that came out of the community.
There were basically people who are monitoring, and continue to monitor the Facebook page.
Primarily, it was questions about technically troubleshooting for Nightscout. A lot of people were asking
about what wouldn't work, but give replies back, asking how to fix technology. It is also interesting
because what happened is that people are sharing all sort of thing.
Advice about general diabetes technology, what types of equipment you should use, what is useful.
They give information about how to manage skin rashes with the device as individuals are using.
People are providing insights and help around blood sugar management and how to deal policy
issues, whether it relates to a school nurse, or covering devices that are required.
These are some of the things that have come out of the community. It is just this idea that patients…
Or families. A lot of people who use is our families with young children with type I diabetes. But you
can let them go to the beach because you understand what is happening with their blood sugar while
they are far away from you.
I think this is my favourite example, because this is truly in the cloud.
This is a map of people who have decided to identify themselves as users of Night Scout. What
originated in the US has spread to a global phenomenon, and there are people all over the globe using
this technology. This is a great example of what you guys inside the Edge community are trying to
propose, and it is this idea that health care is no longer delivered through the walls of their health care
delivery system. This is something that has been absolutely driven by social media. It is people
adopting and finding out about tools and technologies for managing their disease that have no
boundaries globally.
There's actually now 18,000 members in the US cloud group. There is another combination of about

7700 in the international group, representing countries that have their own Facebook groups. The
bottom line is it was created because there are so many people on the Facebook group now that when
you post it immediately disappears because there are so many people posting.
These local groups are created for local communities around the larger community, using the
technology.
These are just some of the country groups. In terms of our ethnography, open source code was a big
piece of the innovation for this. What one person knows, everybody knows. That openness is a really
important piece of why this has spread so quickly. Essentially, this is a great example of a
collaborative network, which is a cyber team of self-motivated people with a collective vision to share
information and work.
These little organising units have basically spread out of this larger community, so now there is a
leadership team, a foundation that is trying to take forward the spirit of the community and do some
more formal work with the community through formation of a formal nonprofit. They are partnering with
to do patient centred collaborative networks. I think this was the first time that patients had directly
interact with FDA around the technology. That was a milestone.
There was a thought that the happening of Nightscout might have led FDA to approve technology
versions for systems that go more quickly. There is a core development team that updates the code
and new features. There is now 152 features that happening about 1.5 years.
Talk about technology innovation. Among those individuals, it is pretty incredible.
Then there is the support team. There are people in the US that are basically, like a answering support
calls on a regular basis to help individuals with their setup. What is interesting is when they go to bed,
apparently there's another group of individuals in Australia, on the other side of the globe, who get up
and do that support when the US people go to bed.
Then people are also doing sort of Meetups, and there will be a bunch of volunteers from Nightscout
who will do meetings to help those individuals to support or set up assistance.
You would assume… The group started in April, 2014, and now we're in June. This goes for more or
less the first two years. What this is, it is secondary data from the Facebook group that we were able
to download as part of our research IRB.
We don't know exactly when people join, but we make an assumption that the first time they make a
post is the first time they join. You can see there is this peak around July-August 2014, when people
started to hear about this. There were a lot of members joining the group.
Then in March/April/May 2015, the commercial solution started drifting in. The approved app, they
started getting approved. You can see a dip where perhaps there's a little bit less adoption because
now the commercial system is easier to set up, so people might use those systems as opposed to the

DIY solution.
What is interesting is there are continually new members even beyond that point. What is really
interesting is that Nightscout has basically spawned a movement within the type I diabetes community.
When you get the commercial solution, you just get one kind. With Nightscout, you get a number of
different devices. There is an infinite variety of Android versus IOS. There are all kinds of opportunities
for mixing and matching, like a modular design.
There's a ton of interesting watch faces that have been developed. Those are really interesting
because they are fascinating designs, and users have created them to serve their needs. These are
maybe the ones that should be used by companies in the future to create more user centred products.
Then there are new ways of thinking about the data. Brandon has his blood sugar alongside the
temperature and his bus route. That is an interesting way of thinking about it.
Then people have even developed watches that can tap into Nightscout while you are camping and
you don't have an internet solution. This person made a menu bar where he could display his
numbers.
Then people start developing other things like 3-D printer cases to hold the phone close to the receiver
so… There was a breakage that would often happen. This is to keep the technical system stable.
Now basically people are innovating on the hardware. They are developing their own receivers from
the censors people are using that are FDA approved. The rig has gone from a technical box size to
something that fits inside a Tic Tac box.
The Makers are now moving into artificial pancreases as well. With help from Ben West, who helped
us originates in code, they are developing their own systems, none of which are approved in the
commercial side, and there's a lot of companies that are pursuing the solution officially, through the
regular channels. What is interesting is people are saying, "I don't want to wait any longer, I need
these tools now." They are getting incredible results for their quality of life.
This is OpenAPS, the artificial pancreas system. They exhibited at the San Francisco Maker Fair this
spring.
Then we have done some survey work to try and understand the impact on health outcomes, and
there's a lot of people who may be sceptical about "rogue elements" doing the things that are not
approved, but what is fascinating is people are reporting incredible results. This is self-reported data
before and after. It is social media groups, so there is a problem with generalisability, but this is
evidence of the potential benefits of the technology and being able to use it.
Nightscout is a movement for their beaches. Patient/caregivers are believed innovators. They are

driving this model for personal solutions. They are figuring out what works best for them. The third
piece is just the fact that they were doing sharing of open source code through GitHub, and that has
helped to propel the movement.
This is the lead user community. Eric von Hippel talks about important innovations later on in product
development. He is a professor at MIT. This is a prime example of that, they lead user innovation
community. So the question or the challenge for us is how do we translate this knowledge to research
and care delivery?
I'm going to close out with just a couple of comments about design and making on a healthcare
platform. The journey we have taken, I think it is interesting, because there is a spectrum. At one end
you have professional design, so you have people that are certified as deciders. Maybe it is a design
firm who are trained for many in design. Then you move towards humans that are design. Maybe it is
user as object. You see a lot of focused research. The professional designer is still driving the overall
design agenda, right?
Then there is participatory design. That is allowing users to be part of that human centred design
process. Having stakeholders cocreate and work with some of the designers to develop the solutions.
Finally, at the end, there's this idea of the Maker movement. There is this idea that we are all
designers. We can create whatever it is we want and we can create our solutions without necessarily
the help of others.
That kind of brings in this whole concept of meta better design. Better research has totally shifted.
Through the work we have been doing, we have been moving more towards the right-hand side and
witnessing what is happening inside the type I diabetes community. My focus all my idea of how to
create innovative healthcare systems is to make the move to that quote/unquote, meta-design model.
I have been spending time with colleagues from the school of information. They come from a
background of competing interaction. Mark Newman introduced me to this individual named Gerhardt
Fischer who talks about meta design. It is this idea that you are trying to design systems assuming that
all of the users in the system are designers.
The meta designers make the assumption that the first model is going to be OK. But we're going to
work with our users and designers to make it better. It is not fixed.
It is changing and really shaped bottom up by the users. There is a link there to the paper where you
can learn more about it, but I think it is fascinating.
What is an example of this? I don't know if you guys are familiar with Scratch, it is a tool which has
come out of the MIT lab, it is something my kids use, but essentially it is a computer programming
system that is truly democratised design.

It allows kids to create scenarios, games, movies, videos, what it has done is given them these Lego
blocks, and it allows them, any modular way, to combine the blocks in any way they want to create an
infinite number of prototypes, and, more products or outputs they want to make.
It is a really interesting and fascinating model for health care. Why can't we have a Scratch for
healthcare? They talk about this in education, and they talk about his digital fluency should be
designing and remixing, not just browsing and interacting.
How do we create healthcare systems that empower individuals to become designers?
How do we give them the tools and technologies to design in modular fashion? To create the infinite
number of healthcare solutions that we need to develop models of personalised medicine?
I am not going to go into this, these are just some of the design objectives from Fisher, I think these
are interesting criteria we could talk about.
I actually just wanted to open it up for discussion. I feel I have talked for a long time. It is hard to give a
talk, and also focus on the feeds. I think you wanted to shift over to the feeder to have more of a
conversation.
DOMINIC CUSHNAN: Thank you, Joyce that was amazing. I'm going to hand over to Kate, if she had
here, to have a chat about some of the conversations that have gone on on Twitter.
KATE POUND:
Hi, I am here. It has been a brilliant session. Thank you, Joyce. I did the design thinking course last
year, Gareth was saying on Twitter, "Let's move away from traditional (inaudible)."
It made me wonder what a Maker Movement project plan would be like. I would like to ask Joyce, how
do we get from product design to final output, how do we keep the energy going to ensure we deliver?
JOYCE LEE:
I think part of our problem is that we focus so much on final product that we don't think about new
systems. That is one of the powers of design and design thinking. It is really important to release
something to get feedback on it and morph it over time.
We have this assumption we are going to decide to do something, we're going to build a ship, and the
ship is fixed for ever once we have done that.
The whole point of designers to create multiple prototypes, and see which prototypes are most
effective, popular or useful to our patients. Then let's work on the ones that resonate the most so we
focus on the users and designs that are useful as opposed to the large ships that we build and that no
one ever comes to.
DOMINIC CUSHNAN:
I agree. I completely agree. There is a great opportunity to start working with the communities that can

shape the rest of the system. I'm going to hand over to Carol now, Carol, can you talk about some of
the interesting comments?
CAROL READ:
There has been some fascinating chat in the chat box, people giving their ideas about how we can do
this, and what is going on in the UK. There is lots of movements like We Are Not Waiting, a question
for Joyce, many diabetes patients are looking at how they can hack existing technology to make new
technology that works for them.
That aims to be a common understanding as well, Joyce? Diabetes is one of the main conditions
people are looking at?
JOYCE LEE:
Diabetes is like the poster child for digital health. There are measurements people are doing inside
their homes which is not inside the health care delivery system, 24/7.
It is a self managed disease. My patients do all of the management. They understand living and
managing diabetes much more deeply than I do.
Having real-time information to blood glucose values allows you to take actions in a more proactive
way, to reach whatever your goals are, which might include improving your glycaemic control.
It is the disease that is there, and the disease that is self managed. It is a disease where people are
already measuring patient managed outcomes.
The first disease, then there are other diseases that one model after that.
CAROL READ:
Looking at your slides, people are using open source code, they're coding for themselves, younger
people are getting very much involved in that.
We have all sorts of restrictions in this country about what people can and cannot do. What companies
will let them do the tech that is already there, when people are hacking it. How have you overcome
that where you are with Nightscout?
JOYCE LEE:
I see this as a bottom-up, do it yourself culture. As a provider, I am not going to prescribe it, frankly, I
don't know how I would do that. I will refer my patience to it and say, "You should check out this
community, you should check out this technology, you should see if it is something that meets your
needs, it is something I think is pretty powerful, and empowering."
I think a lot of the technologies that users are building are a lot more advanced in their design and
execution than what exists is commercially. We're not necessarily telling everyone to guide and adopt
Nightscout. We are trying to demonstrate the power of the maker movement, and our patients inside
health care delivery.

We are trying to socialise the really important, positive aspects of this. In the work we are trying to do,
we are trying to build a collaborative research network with the foundation and individuals in the
community. We don't assume we can grab the entire community, but what we are going to do is try
and use the principles of open science, and use the tools of social media, and take advantage of the
fact there is a lot of people who have the technology and are interested and willing to contribute to the
community.
We are trying to take advantage of the fact there are a huge number of users inside the system,
deploy that energy and spirit to patients and research, and allow patients and caregivers to drive the
research and the ideation and design of it.
CAROL READ:
I think you have covered that really well. What we can see from the Maker Movement is true
innovation. It is taking that big leap.
It is about having a real confidence and belief that you can make several iterations, and you can make
something that will work for people to use and improve their daily life. I am not monitoring Twitter, but
from my Twitter feed I have people I have never spoken to on Twitter before, people from the STEM
community have contacted us, they're loving your slides that I have been tweeting.
They said it "warmed the cockles of their heart."
I thought it was really fascinating, they have not been on my Twitter feed before, obviously they picked
it up from the pictures I have been tweeting. I thought that was really lovely, and I wanted to feed it
back to you.
DOMINIC CUSHNAN:
Thank you, Carol.
KATE POUND:
I just wondered if there was time to ask any questions from the people joining the session today. I don't
know if Paul can manage the technology. I thought we might have time if anybody wanted to ask a
question.
Paul, would you like to add in what people have to do to ask a question, I think it is put up their hand.
PAUL:
If anyone would like to ask a question, post a quick message in the chat, or you can raise your hand.
To raise a hand, if you see underneath the list of everyone's name, there are some icons. There is one
icon which is a symbol for raising your hand.
If you raise your hand, I will un-mute you and invite you to speak.

KATE POUND:
Joyce, I just wondered if you could tell us what you would see would be the first steps to start a Maker
Movement at your own hospital?
JOYCE LEE:
We don't have a ton of resources right now, we're trying to capitalise on the fact there is a community
and a lot you can do with the community.
One critical piece is to get the ball with different skills and interests into the same room. What we have
tried to do, we know now from our Make Health Fest, we know we have to bring people to the hospital,
demonstrate, or start building local connections to try and do local building projects.
That is the first thing. I feel like there is a lot of interest in the Maker Movement in corporate America
because they feel it is a source of innovation.
I think a piece of it is just trying to get people to build a culture around it. There are things that we can
do, things that we can work with, and what are the goals we want to achieve.
It can be a little bit dicey, regulation liability and making. But I think a key piece of this is trying to make
sure health care values this, but maybe almost removing, to a certain extent, the healthcare
involvement of it.
The piece of it that we want to share is that patients can do this for themselves, they don't need us,
they don't necessarily need the doctors, we're not trying to create a dependence on our system. We
are trying to say that we have the ear of the patients.
They do trust us, to a certain extent.
We need to make the introductions and connections, and I think what we need to do is create more
opportunities for having this bottom-up movement inside of a system that does not even appreciate the
fact they conduct themselves.
DOMINIC CUSHNAN:
There has been a movement that has happened about the quantified self, and people analysing data
regularly, not just diabetes.
Do you think that is a route, to engage with that kind of market, have those conversations?
JOYCE LEE:
However you want to describe it, "maker, Tinker, programmer" generally there is just not enough
(inaudible). We don't have technology specialists beyond IT, which is different to people who actually
create things.
There is a workforce issue and said the systems we live in.

DOMINIC CUSHNAN:
In the UK, there is a digital divide between those that can use technology, you know, can 3-D print,
using the technology that has evolved rapidly in the last 10 years, and those that have not embraced
or kept up with it.
I have been doing a project telling people that people can leverage more than they ever have been
able to, to impact society.
DR JOYCE LEE:
Yeah.
SPEAKER:
We have a participant who has just put their hand up and would like to speak.
SPEAKER:
OK. First of all, I assume you can hear me. Great. That was a great talk. The Nightscout project I have
always been fascinated by.
He has partly out of one of my questions, and that is these insurgent movements have a greater
appetite for risk on the basis of potential benefit than maybe most organisations would have. In the
early days, people would have had conniptions.
The second question is any sense you have for commercial organisations ready to step in and turn
your learning into more effective products? So, two things. One is risk and the other thing is the tipping
point for people saying, "gosh, we can turn this into a product."
DR JOYCE LEE:
Risk is a personal decision. Tightscout is a secondary display to what you might already see. In that
sense it is not as "risky" as the smaller percentage of patients who are doing the artificial pancreas.
One might imagine that is more of a risky scenario.
But when you talk to them, they talk about the fact that there is a bigger risk in not having additional
tools and more access to information and more opportunity to act. When you talk to them, the risk of
not acting is actually much greater than the risk of acting. I think that's the first thing.
The second thing is I wouldn't necessarily be prescribing an artificial pancreas to my patients, right?
But what is interesting about the way they have done this is a posted all of the code. It started with 2-3
individuals using the code for the system, and now they have expanded to about 80.

What they are doing is they are having individuals build the system themselves, and they are actually
understanding their diabetes in a much more comprehensive way. What they are also doing is more
peer to peer learning around sharing what they have learned from the experimentation and how they
tweak settings or how they change things.
It is a really great model for thinking about propagation of self-management skills and using technology
to better understand your disease. Again, I'm not going to prescribe it as a provider because I don't
know about the systems and the risk, but I know that people choose to use it and they join the
community trying to learn from it and they build it themselves. I think they would say the risk is greater
to not use the technology.
As far as, I guess, innovation and/or the enterprising corporations, I think the diabetes community has
definitely taken note on the corporate side of what is happening in the system. There have been some
interactions with the key Nightscout leadership group and some of the companies. I think there is
definitely interested in doing innovation, thinking about a group of leading innovators who are
potentially developing the product for the next couple of decades.
But I wouldn't necessarily say that medical device companies are really pivoted towards patients or
user centred design. They definitely having interactions and there is interest, although knowing how to
do that partnership still remains to be determined.
DOMINIC CUSHNAN:
Thank you, Joyce. If we have no other questions are letters do we have any other questions, Paul?
SPEAKER:
We do have a couple. Janet Waterman has asked about the costs?
DR JOYCE LEE:
That's a good question. There's multiple costs. There is opportunity costs and technology costs… We
don't have a lot of resources, so we, to a great extent, tried to rely on a group of motivated students
who are very interested in gaining experience in healthcare design and then charge us as much as
professional designers do. It is hard to say because every project that we have worked on, I would say
a lot of the workshops are a labour of love and a desire to continue to infuse design into the healthcare
system. As far as the technology, I think it depends on what you are trying to build and accomplish.
SPEAKER:
Perfect. There were a couple of joint questions, which are very similar. One is from Sasha, asking how
these practices change, and a second from Janet, for how we minimise risks?
DR JOYCE LEE:
In terms of my clinical practice, I think I would like to do as a diabetes doctor is eliminate the need for
panic. Patients come to see me once every three months or a few times a year, they spend some time
with me, I spend some time with a diabetes educator, and a couple of hours later they leave. They
don't get any peer to peer support.

Ideally, we should be creating health care delivery systems… My dream would be like a Maker clinic,
right? Everybody could bring their own solution, which could be simple or techie, but which allows for
peer-to-peer interactions and potentially removes the doctor from the equation.
We have a three-month measure. The fact they need to see me in clinic is sort of an artefact of
previous… Of a previous management of diabetes that didn't have access to digital tools, but didn't
have access to every five-minute blood sugars.
I see opportunities for changing the way that clinic is conducted, and also saying, "you know what, you
don't need a doctor so much as peer to peer support and being in a maker/creative environment."
DOMINIC CUSHNAN:
Thank you, Joyce. Lots of good answers and a really good conversation. I think we will end up
continuing a lot of this after this session through Facebook and Twitter and other correspondence.
Is this your slide, Joyce?
DR JOYCE LEE:
Yes, I just wanted to acknowledge my supporters, collaborators, and I wanted to share links for Twitter
and my website. We use the hashtag #makehealth.
DOMINIC CUSHNAN:
I think everybody would like to thank you for getting up so early in the morning or perhaps you haven't
been to sleep yet! But thank you for joining us and being so insightful. I don't know if you can press the
next slide for me?
Thank you, Joyce. For those of you still on the line, we would like to invite you to our next Edge talk.
Thank you, Joyce, and we look forward to continuing the conversation.
DR JOYCE LEE:
Thank you, goodbye.

Maker Movement Brings Patients into Healthcare Design

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