Empowered citizen ‘health hackers’ who are not waiting
Timothy Omer
Abstract
Due to the easier
access to information, the availability of low cost
technologies and the involvement of well
educated, passionate patients, a group of citizen ‘Health Hackers’, who are building
their own medical
systems to help them overcome the unmet needs of their conditions, is emerging. This has recently
been the case in the type
1 diabetes community, under the movement #WeAreNotWaiting, with innovative use of current
medical devices hacked to
access data and Open-Source code producing solutions ranging from remote
monitoring of diabetic children to producing an Artificial Pancreas System to
automate the management and monitoring of a patient’s condition. Timothy Omer
is working with
the community to utilise the
technology already in his pocket
to build a mobile- and smartwatch-based
Artificial Pancreas System.
Background
Type 1 diabetes is a condition requiring around the clock management. Despite the multiple
daily injections and invasive blood testing, type 1 diabetes patients find that
the main challenge to managing their condition
is the mental pressure to
keep track of their blood sugar levels, treatments and medication calculations,
leading them to exhaustion. After more than 22 years as a type 1 diabetic, I agree with them.
Existing care is unrealistic
The NHS Type 1 Diabetes Care Pathway [1] is focused on a yearly follow-up between
patients and a diabetes clinic of
trained experts. Patient performance over the previous year is reviewed and
treatment adjustments suggested, but this is often of limited value for the pa-
tient, whose state on a given day may often not match that on the next, and a yearly discussion cannot sum- marise
the patient’s personal
challenges. Therefore, the outcome is
often a ‘bending of the truth’ to meet the clinician’s expectations.
The
most modern accessible technology for type 1 dia- betes management is an
insulin pump, which provides a constant
supply of insulin, as well as a self-funded [2] continuous glucose monitor, which
provides real-time feedback
of the patient’s
blood sugar levels. These de- vices provide many functions and high volumes of
data, all of which are very welcome and useful, but such sys- tems always fail with regards
to patient expectations to understand and process all of this information. As a result, patients become
overwhelmed by a feeling of judgement by healthcare professionals, the vast
amounts of ensuing information, and alert and alarm ‘shouts’ from their de- vices when they have failed at
being a ‘good
diabetic,’ as well as with their own disappointment of
their body letting them down.
Are things going to get better?
Diabetics are getting
better at understanding
their condi- tion and its cause and reactions,
as well as more technically
able to finely tune
treatments and understand
real-time in- formation, yet
patients are still not able to processes and act upon such
data; this is due to incorrect use of the
data. Data is commonly locked
into the devices, with no or limited
ability to share across devices, and
the analytics required to process
such data are extremely complicated. Nevertheless, patients should
not be made to feel that managing their diabetes
is their full-time
job!
When enough is enough
The lack of accessible and actionable data is a common frustration in the
type 1 diabetes community. Given the easier communication between diabetics
with online communities in recent times, the community have been engaging in
conversation, with a key event in the com- munity being the first DiabetesMine
D-Data ExChange event [3], which highlighted the frustration of patients
waiting for their needs to be addressed and where the community declared “We
Are Not Waiting”. And rightly so, why should patients wait to address their
current needs?
Patients currently have access to global online commu- nities that allow
unrestricted sharing of ideas, projects and collaboration efforts to overcome
challenges [4], as well as access to cheap technology from the Hobby
Electronics movement [5] and a passionate well-educated pool of indi- viduals
with a common goal. This critical mass, which ral- lied under the hashtag
#WeAreNotWaiting, saw rapid progress in DIY medical devices in the type 1
diabetes community [6].
Patient-driven projects
Through community-driven innovation there has been a surge
in edge cases being developed, which may be of little interest to the medical
industry either due to costs or risks. By gaining access to their own
data under their terms, several patient-driven
creative solutions have been developed:
●
To monitor continuous
glucose monitor data from a smartwatch [7]
●
To remotely monitor a child’s blood sugar levels [8]
●
To provide louder alarms
and treatment suggestions according to the data [9]
●
To analyse patient data
and automate medication delivery [10]
These projects are
empowering the patient
through the better use of
real-time data to help manage a real- time
condition. Watching one’s blood sugars rise on a smartwatch after
eating a pizza is a lot more powerful than the screen on the manufactures
device showing the same data in one’s bag.
The path to a DIY artificial pancreas
Only a year ago, the thought of an artificial pancreas
sys- tem (APS) was overwhelming. The multiple components required and skill
needed to provide an efficient and safe system is beyond the majority of
citizens (with some ex- ceptions [11]), yet the individual challenges are
more easily tackled. Through a step-by-step method of collect- ing, merging and
processing community accessed data from patients’ devices to provide meaningful actionable information, there has been a
surge in the sharing and convergence of community DIY projects. One of the
outcomes is the OpenAPS project [8], which provides
the instructions and blueprint of a DIY
patient-built APS. Yet, how effective can a patient-built ‘amateur’
system be? This is best summed up by a quote from a recent OpenAPS user:
“Dear Machines: You Can Take This Job” [12]
Rise of the machines
In 2015, I decided to fork (make a copy of) the Open- APS
project and make use of the supercomputer in my pocket to assist with
management of my diabetes. With the communities Open Source projects,
namely xDrip and OpenAPS, I self-taught myself mobile
development and built an APS app [13]. I had no need to start from scratch or
learn the best algorithm to crunch my data, I took what the community had
already developed to kick start my own project, which allowed me to focus on
building a system unique to my needs and on the add- itional functionality that
I required.
While the system I built was an Open Loop system lacking
communication with my insulin pump, this was enough to significantly help me
with the
management and treatment of my condition. The system assisted with one
of the most problematic areas of my care – me. The app is free from the
frustration, impatience and, at times, simple human ignorance, it does what I
cannot – analyse my data every 5 minutes and make an unemotional logical
decision. I moved from reactive to proactive management of my diabetes, where
the APS system would provide treatment alterations to manage the highs and lows
of my blood sugar levels and often stop such events from occur- ring. It is a
liberating feeling, for the first time in 22 years I can let my diabetes take a
back seat without damaging my health.
The data-rich
patient
Where is this heading? Access to information, collabor-
ation and low technology costs are only going to improve over time. As the
communities’ expertise improves, there will be an increase in medical
management challenges tackled by the community. Patients will be able to
understand their conditions by analysing the wealth of information captured,
access rapid production tech- nologies leading to easily available high quality
tools [14], and be on a par with
the technically capable 1 % due to more accessible tools and sharing of
knowledge through community-led workshops [15]. This will spread beyond
diabetes care to other conditions ripe for such disruption [16].
Regulate the
unregulatable?
Such rapid innovation and progress in the community is
partly the result of a lack of regulation. As with all med- ical devices, there
is a risk of their inappropriate use or
The progress of patient-led innovation
shows no sign of slowing and ignoring such a movement will
not only be futile but also a lost
opportunity in the way care is provided for such long-term conditions.
Community work should not be seen as competition to the medical industry or healthcare
providers, but rather as a treatment path challenging and pushing the
boundaries of what is cur- rently possible, as well as being a wealth of free
data [17]. Categorising the type of community care that can be pro- vided will
allow assessment by the medical industry and healthcare providers for them to
decide on what they are willing to support and what they would prefer to be
less involved in. With the United Kingdom’s National Health Service in turmoil due to spiralling costs, here lies an
op- portunity to utilise a pool of human resources with a pro- active interest
in their condition and a willingness to share their knowledge with others.
These are the empowered patients who own their condition – support and encour- agement of
such communities can be provided at almost zero cost to the National Health
Service. It is time to start embracing this community and acknowledging their
po- tential as well as the possible risks that some projects may introduce.
Conclusions
The community is a large, experienced and skilled resource that is currently
underused. Their access to information, sharing of ideas and drive to improve their quality
of
life will continue to flourish [18]. Do these
DIY projects really improve the management of chronic conditions? Or is this just an effect of the patient being more active in their management? For
me, the outcome is the same, I am empowered by the community and the tools they
have developed. We are now managing our condition and, whether you agree or
not, progress is not slowing, as
‘We Are Not Waiting’.
TO worked
in the IT industry specialising in the implementation of business systems and processes that empower staff with the right technology. As a type 1 diabetic for over 22 years, TO has been passionate about
using his diabetes technology and data to help him manage his condition. Working with the #WeAreNotWaiting movement
of citizen ‘Health Hackers’, who are producing Open Source solutions and hacking existing
medical devices to their
needs, he is also producing a mobile-based Artificial Panaceas System and
prompting discussions about this patient-led movement at talks and conferences.
References
1.
National Institute for Health and Care Excellence. Type 1 diabetes
in adults Care Pathway. http://pathways.nice.org.uk/pathways/type-1-diabetes-in- adults. Accessed 27 July 2016.
2.
Input. NICE Guidelines for Long-term (continuous) use of a CGM. http://
www.inputdiabetes.org.uk/cgm/cgm-costs/ Accessed 27 July 2016.
3.
The creation of the tagline “We Are Not Waiting” http://www.healthline.com/ health/diabetesmine/innovation/we-are-not-waiting Accessed 27 July 2016.
4.
Example Communities include: Facebook CGM in the Cloud (https://www.
facebook.com/groups/cgminthecloud/), Gitter Developer Chat Rooms (https://gitter.im/orgs/nightscout/rooms), OpenAPS GitHub code (https:// github.com/openaps/oref0)
Accessed 27 July 2016.
5.
xDrip Parts. Example Hobby
Electronics hardware-based community project. https://github.com/StephenBlackWasAlreadyTaken/xDrip/blob/master/ hardware_setup.md Accessed 27 July 2016.
6.
Diabetes
Hacking Timeline. Summary of key community projects over the last few years. https://drive.google.com/
7.
Don Browne Dexwatch. Monitoring CGM data via smartwatch.
http://dexwatch.blogspot.co.uk/ Accessed 27 July
2016.
8.
The Nightscout Project. Uploading
CGM and other data to a personal website. http://www.nightscout.info/ Accessed 27 July 2016.
10.
Open Artificial Pancreas System
using existing medical
devices and assessing their data via community projects. https://openaps.org/what-is- openaps/ Accessed
27 July 2016.
11.
Meet the Bigfoot Family and Their Homemade Closed Loop System.
http:// www.healthline.com/diabetesmine/bigfoot-family-their-diabetes-and- homemade-closed-loop-system Accessed 27 July 2016.
12.
Dear Machines: You Can Take This
Job - Michael Stebbins Write-up describing
his artificial pancreas. http://labs.teague.com/?p=2035 Accessed 27 July 2016.
13.
HAPP. DIY, Open Loop,
Artificial Pancreas. http://www.hypodiabetic.co.uk/ home/blog/hacking-diabetes/diy-open-loop-artificial-pancreas Accessed 27 July
2016.
14.
Example 3D printed projects
from the #WeAreNotWaiting Community. http://www.shapeways.com/search?q=xdrip+or
15.
Andrew Abramowicz Twitter.com | Example
of a community lead “xDrip
Party”
where sharing of knowledge and assistance is provided to build
xDrip receivers https://twitter.com/westwindscanada/status/ 670718035687174144 Accessed 27 July 2016.
16.
Hearing Hacks
Twitter.com | Any of the founders of #WeAreNotWaiting in London? Trying
to build something similar for #hearingaids industry and could use advice https://twitter.com/hearinghacks/status/633292264773668864 Accessed 27 July 2016.
17.
Nightscout instance
displaying Tim Omer’s blood sugars and other
treatment data. http://bg.hypodiabetic.co.uk/ Accessed 27 July 2016.
18.
We’re Not Waiting
for Our Automatic Pancreas System
| Mark Wilson, Ben West, Jason Calabrese, James Matheson, Scott Leibrand, Erzsi Szilagyi, Mikel Curry, Jason
Curry discuss the creation of the OpenAPS
system and results of
real world usage. https://medium.com/quantified-self-public-health/were- not-waiting-for-our-automatic-pancreas-system-888162fcde2b#.e17scv470 Accessed 27 July 2016.
