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).

1. 10/18/12
Visualizing
User
Innova1on
in
Health
Care
Pedro
Oliveira,
Católica-­‐Lisbon
School
of
Business
&
Economics
Katja
HuFer,
University
of
Innsbruck
Denita
Cepiku,
Tor
Vergata
University
Sara
Poggesi,
Tor
Vergata
University
h6ps://pa1ent-­‐innova1on.com
1
Agenda
‣ 1. Introduction: user Innovation in
health-care
‣ 2. Our project
‣ 3. Visible outcomes:
‣ A) International survey to identify
patients innovators
h6ps://pa1ent-­‐innova1on.com
‣ B) Promotional website for promoting the
project (namely among patients
associations)
‣ C) Social network/FB app/platform for
P2P solution sharing
2
1

2. 10/18/12
Introduction:
user Innovation in health-care
3
3
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
4
2

3. 10/18/12
What are the limits of User/Patient Innovation?
British engineer
Tal Golesworthy
designed own heart
valve implant and
saved own Life
(2004)
5
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
6
3

4. 10/18/12
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:
"in
recogniUon
of
his
contribuUon
to
the
‣ I suffered from anaemia and tiredness,
treatment
of
diseases,
and since I lived in a house facing the
especially
lupus
vulgaris,
north, I began to believe that I might be
with
concentrated
light
helped if I received more sun. I therefore
radiaUon”
spent as much time as possible in its rays.”
7
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
8
4

5. 10/18/12
“Frustrated by the slow pace of
clinical drug trials,
patients are trying to brew their own
drugs at home and testing it on
themselves…”
Wall Street Journal, April 15 2012
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
10
5

6. 10/18/12
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
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
12
6

7. 10/18/12
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
Inflatable
vest
-­‐
device
that
vibrates
at
high
frequency
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
14
7

8. 10/18/12
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
15
16
8

9. 10/18/12
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)
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.”#
18
9

10. 10/18/12
19
Prostheses: electronic
trousers
Amit
Goffer
was
paralyzed
in
a
car
crash
and
used
his
skills
as
an
engineer
to
invent
the
electronic
trousers
Amit
Goffer
is
a
User
Entrepreneur
ReWalk
20
10

11. 10/18/12
Medical devices
(including some for general purposes)
Abnostrain
-­‐
medical
device
to
assist
abdominal
surgery
paUents
in
raising
their
upper
body
from
a
prone
posiUon.
An
injecUon
port
that
gives
insulin
injectors
a
mean
to
give
themselves
their
doses.
Alarm
watch
and
alert
about
what
medicaUon
to
take
and
when
(useable
in
different
diseases).
Insulin
delivery
system.
A
novel
body
posiUon
orientaUng
device
that
monitors
sleep
posiUon
and
acUvates
a
vibraUon
alarm
to
alert
and
discourage
the
paUent
from
sleeping
supine.
Shower
Shirt
Mastectomy
Garment.
21
Sleep Apnea
RespireAide
While
searching
the
soluUon
for
sleep
apnea,
Harry
Cutler
found
that
every
device
available
on
the
market
was
expensive
and
uncomfortable.
He
invented
RespireAide
and
started
to
produce
it
22
11

12. 10/18/12
Temple Grandin (high-functioning autism)
Invented the hug
machine to calm
people who are
overly sensitive to
human touch
23
User/Pa1ent
Innova1on
vs.
Producer
Innova1on
Medical
treatments
and
User
first
Producer
first
Total
devices
CysUc
Fibrosis
8
(47%)
9
(53%)
17
Asthma
2
(40%)
3
(60%)
5
Sleep
Apnea
4
(50%)
4
(50%)
8
Cancer
5
(42%)
7
(58%)
12
Diabetes
11
(79%)
3
(21%)
14
Total
30
(54%)
26
(46%)
56
LimitaUons:
sample
of
treatments/
soluUons
was
idenUfied
by
paUents
Source:
Oliveira,
Pina
e
Cunha
and
Siemsen
(2012)
24
12

13. 10/18/12
Findings
User
Entrepreneurship
Medical
treatments
and
Created
a
Did
not
created
a
Total
devices
firm
firm
CysUc
Fibrosis
4
(50%)
4
(50%)
8
Asthma
0
(0%)
2
(100%)
2
Sleep
Apnea
3
(75%)
1
(25%)
4
Cancer
2
(40%)
3
(60%)
5
Diabetes
7
(64%)
4
(36%)
11
Total
16
(53%)
14
(47%)
30
Source:
Oliveira,
Pina
e
Cunha
and
Siemsen
(2012)
25
Conclusions
 PaUents
play
an
important
role
in
the
development
of
TTMD
 in
parUcular
when
they
have
the
informa1on
advantage
and
can
afford
it)
 PaUent
have
also
idenUfied
new
diseases,
as
well
as
the
soluUons
 Many
innovators
created
firms
–
they
are
User
Entrepreneurs
 Oken
the
leading
scienUsts
are
also
paUents
 Because
of
the
investment
and
informaUon
required,
producers
(pharmaceuUcals)
innovate
in
drug
development
or
gene
therapies
Source:
Oliveira,
Pina
e
Cunha
and
Siemsen
(2012)
26
26
13

14. 10/18/12
Our
Project
27
27
27
Where
are
the
user
innovators?
Make
them
visible
!
28
28
14

15. 10/18/12
How
many
UK
consumers
innovate?
Total User Innovators in UK = 8%
3.8 million
Modified a consumer product for own use 5.9%
Created a consumer product for own use 4.4%
Thought they were the first to develop 4%
the innovation they reported
Sample (n=2109)
Consumers aged
15+
Source:
Flowers
et
al.
NESTA
2010
29
29
Research
scope
PotenUal
• We
focus
on
chronic
User
Innovators
diseases,
as
it
is
more
likely
that
paUents
try
Actual
User
to
find
a
soluUon
for
a
Innovators
long-­‐lasUng
or
recurrent
problem
Celebrity
User
Innovators
30
30
15

16. 10/18/12
Research
quesUon
RQ1:
How
can
we
idenUfy
the
user
innovators
in
health
care
and
the
innovaUons
they
developed?
RQ2:
How
can
we
make
them
“visible”
to
society?
Possible
follow-­‐up:
How
to
make
the
society
benefit
from
users
innovaUons
in
Healthcare
services
?
(How
can
we
make
UI
sustainable?)
31
31
Research
stages
1)
(Extension)
2)
Fostering
User
IdenUficaUon
VisualizaUon
InnovaUon
in
(and
validaUon)
health-­‐care
Phase
1
• IdenUfy
paUent
innovaUon
stories
• ValidaUon
of
preliminary
findings
through
key-­‐
informants
(paUents,
clinicians,
nurses,
pharmaceuUcals,
hospital
managers,
government
representaUves
etc.)
32
32
16

17. 10/18/12
Phase
2:
VisualizaUon
33
Learn
from
other
plaqorms
34
17

18. 10/18/12
Why
us?
• User
InnovaUon
in
Services,
including
Health
Care;
plaqorms
for
innovaUon
• Health
Care
management;
Public
management
• Open
service
InnovaUon;
Public
management
• InnovaUon
communiUes;
InnovaUon
plaqorms
35
35
The
extended
team
36
18

19. 10/18/12
Outcomes
1. InternaUonal
survey
to
idenUfy
paUent
innovators
2. PromoUonal
website
for
promoUng
the
project
(namely
among
paUents
associaUons)
3. Social
network/FB
app/plaqorm
for
P2P
soluUon
sharing
37
37
A
MulUlingual
survey
38
19

20. 10/18/12
39
40
20

21. 10/18/12
41
42
21

22. 10/18/12
43
44
22

23. 10/18/12
45
46
23

24. 10/18/12
App
focusing
on
paUent’s
soluUons
–
a
user
innovaUon
principle
in
an
open
community.
In
this
project
we
combine
our
knowledge
and
experience
in
innovaUon,
in
technology
that
engages
individuals
and
organizaUons
in
innovaUon,
and
medical
experUse,
to
help
good
soluUons
become
more
visible
among
the
community
of
rare
and
chronic
disease
paUents.
The
core
principle
is
the
one
we
saw
repeatedly
to
bring
relevant
results:
Those
with
a
keen
need,
who
are
discontent
with
the
exisUng
soluUons,
oken
innovate,
creaUng
or
modifying
a
soluUon
that
beFer
fit
their
specific
needs.
And
who
is
to
understand
the
needs
and
know
beFer
the
disease
and
related
problems
than
those
who
live
with
it,
paUents,
and
those
who
care
about
them
-­‐
parents,
siblings
and
friends.
“Pa1ent
Innova1on”
is
a
catalyst
for
things
that
are
already
going
on,
and
helps
those
in
need
to
get
be6er
solu1on
faster,
and
with
higher
reliability.
Behind
this
project
stand
Católica-­‐Lisbon
School
of
Business
and
Economics
in
Portugal,
Carnegie
Melon
|
Portugal
Program,
the
Munich-­‐based
innovaUon
company
innosabi,
University
of
Erlangen-­‐
Nuremberg
and
HHL-­‐Leipzig
in
Germany,
University
of
Innsbruck
in
Austria,
and
University
of
Rome
Tor
Vergata
in
Italy
The
project
is
funded
by
the
Católica-­‐Lisbon
School
of
Business
and
Economics
in
Portugal,
the
Carnegie
Melon
|
Portugal
Program
and
the
Peter
Pribila
Founda1on
in
Germany.
47
48
24

25. 10/18/12
49
50
25

26. 10/18/12
Why
do
we
need
the
PPF
support?
• Proposed
project
is
different
from
typical
academic
research
• To
pursue
implementaUon
of
research
findings
with
objecUve
of
real-­‐impact
• Combine
internaUonal
team
experUse
• We
need
guidance
and
partnerships
from
PPF
51
51
Danke
!
52
52
26