The literature on user innovation in health-care services has identified examples of service development (including medical treatments) by users. For example, in October 1969, Richard Bernstein, a type 1 diabetes patient, came across an advertisement of the first blood glucose meter that would give a reading in 1 minute, using a single drop of blood. The device was intended for emergency staff at hospitals to distinguish unconscious diabetics from unconscious drunks. The instrument weighed three pounds, cost $650, and was only available to certified physicians, and hospitals. Determined to take control of his situation, Bernstein asked his wife, a doctor, to order the instrument for him. Bernstein began to measure his blood sugar about 5 times each day, and soon realized that the levels fluctuated wildly throughout the day. To even out his blood sugars, he adjusted his insulin regimen from one injection per day to two, and experimented with his diet, notably by reducing his consumption of carbohydrates. Three years after Bernstein began monitoring his own blood sugar levels, his complications were still progressing, and he began researching scientific articles about the disease. Bernstein, a “user”, is believed to be the first individual to self-monitor his blood sugar, and was an early advocate for such monitoring by diabetics (Bernstein 2007). Bernstein is just one of many users who developed important solutions for their own disease (Oliveira, von Hippel, and DeMonaco 2011). This is just one of the many examples in which a treatment or medical device was developed by patients. We call these examples the “celebrity user innovators”. We aim at identifying actual user innovators, and plan to share those innovations with patients that can benefit from them. Therefore the following questions should be answered: - How can we identify the user innovators in health care, and the innovations they developed? - How can we make them “visible” to society? - How does society benefit from users innovations in Healthcare services?

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2. Agenda
‣ 1. Introduction: user Innovation in
health-care
‣ 2. Our project
‣ 3. Visible outcomes:
‣ A) International survey to identify
patients innovators
467#8997%1,(3:"((/0%1/(;</=* ‣ B) Promotional website for promoting the
>*0,($,*?/-*@A@*#/&$1/(*#4%-"()* project (namely among patients
associations)
‣ C) Social network/FB app/platform for
P2P solution sharing
L!

3. Introduction:
user Innovation in health-care!
M! M!

4. Motivation
‣ Importance of services: 77% of GDP;
79% of employment (144.4 million jobs) in the
US
‣ Health-care alone 17% of GDP in the US
‣ Growth tendency in developed world
(OECD, World Bank)
‣ Users are doing a lot of product
development (von Hippel 1998, 2005) and
service development (Oliveira and von Hippel
2011)
‣ Despite some evidence, health-care
innovation literature ignores the role of users
(in particular patients) as developers of new
treatments
N!

5. What are the limits of User/Patient Innovation?
British engineer
Tal Golesworthy
designed own heart
valve implant and
saved own Life
(2004)
O!

6. Herb Kern & SAD Seasonal Affective Disorder
‣ Realized that he would get depressed
during winter and discovered that the
reason was lack of natural light
‣ Collected data during 15 years
‣ Contacted the NIMH and was ignored
‣ Dr Norm Rosenthal at NIMH (also a SAD
patient) got interested in his case
‣ He validated the knowledge and named the
disease
‣ Suggested the light therapy
P!

7. Previous work on the effect of light…
Niels Ryberg ‣ “My disease has played a very great role
Finsen, The Nobel for my whole development... The disease
Prize in Medicine was responsible for my starting
1903
investigations on light:
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and since I lived in a house facing the
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north, I began to believe that I might be
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helped if I received more sun. I therefore
%+$)+R&5T
spent as much time as possible in its rays.”
U!

8. Richard Bernstein and diabetes
‣ Type 1 diabetes patient (entered med
school when he turned 45 y.o.)
‣ Began measuring blood sugar
5 times/day and refined his insulin and
diet regimen to the point that they were
normal around the clock
‣ The first individual to self-monitor his
blood sugar
V!

9. Research question
‣ To what extent & under what conditions
can patients innovate?
‣ Can patients identify new diseases and
develop new medical treatments/devices?
• We focus on chronic diseases as it is
more likely that patients try to find a
solution for a long-lasting problem
‣ 1) Respiratory diseases: Cystic Fibrosis, Asthma,
Sleep Apnea
‣ 2) Prostheses: devices to replace missing parts
of the body or to make them work better
‣ 3) Cancer
‣ 4) Diabetes
‣ 5) Medical devices and treatment for general
purposes
W!

10. 1. Sample of 56 treatments or medical devices
‣ 1) Respiratory diseases: Cystic Fibrosis,
Asthma, Sleep Apnea
Research plan
Adapted from Oliveira and von Hippel 2011
‣ 2) Prostheses: devices to replace missing
parts of the body or to make them work
better
‣ 3) Cancer
‣ 4) Diabetes
‣ 5) Medical devices and treatment for general
purposes
2. Identification of date of commercial
introduction of TTMD
Browsed the internet, scanned trade journals and/or
articles for dates of introduction
3. Identification of the sources of innovation
and coding
Identify user practices through literature searchers
and internet browsing
KX!

11. Cystic Fibrosis
‣ Most common autosomal recessive disease
in Caucasians occurring with a frequency of
1-2000 to 1-3000 births !
‣ About 30,000 patients in the US!
‣ No cure, but treatments can ease
symptoms and reduce complications (and
prolong life span)!
‣ The median life expectancy reached 37
years in 2005, compared to 5 years in the 60’s!
KK!

12. Treatments for Cystic Fibrosis
Most treatments are aimed at keeping the airways free of mucus
Based on “Ketchup Bottle Principle”: to get a substance out of a container
with a narrow opening, you turn it upside down and then clap it,
shake it and vibrate it
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KL!

13. Low frequency ‣ Louis Plante (CF patient) had to leave
a concert due to excessive coughing
generator for (seating in front of speakers)
bronchial
drainage
Being a skilled electronics technician, he
developed a device that generates low
frequency vibration
He founded DYMEDSO
KM!

14. Cystic Fibrosis ‣ Emily Haager, CF patient & surfer
treatments
‣ A typical day:
‣ 4 breathing treatments/day (1 hr each)
‣ daily regiment of over 45 pills, incl.
antibiotics to keep lungs healthy, enzymes to
digest the food, vitamins, etc
‣ began surfing and realized she started feeling
much better shared the news with doctors
Medical breakthrough: "saltwater” treatment
The New England J. of Medicine, Jan. 2006
KN!

15. KO!

16. Chest percussion “Myus, her parents to do her chest physiotherapy. So
on
daughter, 26 with CF, depended for most of her life
with electrical her independence was constantly compromised and
she hated it. On other hand, we not always delivered the
percussor
best physiotherapy, simply because were tired, or didn't
have all this time required or were sick. Sure, you know all
of this ... !
Many times I was thinking about a simple solution, which
would deliver a good physiotherapy and wouldn't require a
caregiver. And I am very happy, I could do it. My
daughter uses my eper 100 (stands for electrical
percussor, and 100 symbolizes all my percussion ideas
which were never realized) all the time. According to her it
is much better than the human hand and she can do it
alone. I got good reviews from the hospital for sick children
in Toronto. !
Hanna Boguslawska” Mother of Natalia and founder of eper ltd. (March
2006)
KP!

17. Use of Our questions: Did a patient or patient's family have any
involvement in the initiation of the study?#
trampolines by
children
Dr.J. K. Stanghelle: “The answer is YES ! We were
performing different studies with physical exercise and
cystic fibrosis (CF) at that time, and this was a time
when it became growing interest for such therapy,
contrary to "normal medicine" these days. We were
discussing in several fora what kind of exercise that
could be fun and effective for children with CF, and we
got to hear about a young girl with CF that had a
trampoline that she wanted to use many times a day
for long times, and the parents observed that she
didn't need to use extra treatment for lung drainage
in addition.”#
KU!

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20. Medical devices
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