Pedro Oliveira - Patient Innovation: When Patients Set Out to Help Themselves and End Up Helping Many, CSWGlobal14

Crowdsourcing Week, Singapore, 7-11 April 2014
When patients set out to help themselves and end up helping many
Pedro Oliveira
Professor, Católica-Lisbon School of Business and Economics | Project Leader, Patient Innovation
poliveira@ucp.pt | poliv@mit.edu

‣ World Wide Web
‣ Software: email, desk-top publishing, instant messenger
‣ Personal care and hygiene: protein-based shampoo, „tp”
‣ Sports equipment and apparel: sports bra, mountain bike,
skateboard, kite-surfing
‣ Food: chocolate milk, Gatorade
‣ Office: white-out, post-it
‣ Many financial services: sweep account, payroll, mobile
banking
‣ Many hospitality services: internet in room
‣ Many health care services
What do these products have in common?
2
2Sharing Solutions, Improving Life

FORD T
converted by users into snowmobiles, trucks and tractors
3

FORD T
Not all user innovation become successful products
4
4Sharing Solutions, Improving LifeSharing Solutions, Improving Life

Users respond to needs
5
Users respond to needs

South-North Diffusion:
Mobile banking in the Philippines
An archipelago of 7,101 islands
80% make less than $2 / day
70% have access to cell phone
70% are “unbanked”
6
If necessity is the mother of invention, then we should look for innovatio
contexts of high necessity…

Tomás Fidélis – MSc Thesis Defense
Research documents that patients often innovate by developing new
solutions, sometime all by themselves, to help them manage the
diseases that afflict them.
7
Patients of chronic diseases often innovate
Sharing Solutions, Improving Life 7
Often patients set out to help themselves and
end up helping many

Sharing Solutions, Improving Life
Examples of patient innovations (1)
8
Personalized External Aortic Root
Support
British engineer,
Tal Golesworthy (a
Marfan syndrome
patient), designed
own heart implant
and saved own life
(2004)

Invented the hug
machine to calm
people who are
overly sensitive to
human touch
Temple Grandin (high-functioning autism)
9
9

Prostheses: electronic trousers
Amit Goffer (founder of Argo Medical
Technologies) was paralyzed in a car
crash and used his skills as an engineer
to invent the electronic trousers
ReWalk
10

‣ 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
Herb Kern & SAD Seasonal Affective
Disorder
11

‣ 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
Richard Bernstein and diabetes
12

BLOB a small, portable device that discreetly delivers
insulin (injection)
Why didn‟t you share your device with
doctors?
“Because my solution is oriented to
patients everyday use, and, as a diabetic
patient, I think that the patients are the
ones that have the knowledge in the
topic of everyday use of the device. I
consulted the technical aspects with
engineers, because I know my doctor
doesn't really know about insulin
maintenance.”
Diabetes patient and innovator

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
14
14

Low
frequency
generator for
bronchial
drainage
‣ Louis Plante (CF patient) had to leave a
concert due to excessive coughing (seating
in front of speakers)
Being a skilled electronics technician, he
developed a device that generates low
frequency vibration
He founded DYMEDSO
15

Cystic Fibrosis
treatments
‣ Emily Haager, CF patient & surfer
‣ 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
16

Use of
trampolines
by children
Our questions: Did a patient or patient's family have any
involvement in the initiation of the study?
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.”
17

Chest percussion with electrical
percussor “My daughter, 26 with CF, depended for most of her life
on us, her parents to do her chest physiotherapy. So her
independence was constantly compromised and she
hated it. On other hand, we not always delivered the 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)
18

Sharing solutions, Improving Life
RARE diseases, RARELY a solution
(6-8% of the world‟s population)
Considering the recent increase in the
pace of drug development for rare
diseases… we will need about 660 years to
reach a rate of one drug per rare disease
(adapted from EURORDIS, 2009)

MSc Thesis Defense | Matilde Czernin | 01/11/13
Motivation Our Research Methodology Results Conclusions
55%
(337)
32%
(159)
13%
(62)
45%
(221)
Passive
Active
Active only
PI
N = 496
15
Patient innovator: came up with an innovative solution.
Active: used existing solutions in a different way (not used for treating the solution).
Passive: used existing solutions as recommended by medical professionals.
Sharing solutions, Improving Life 20
Survey 500 patients/caregivers of rare
diseases

MSc Thesis Defense | Matilde Czernin | 01/11/13
Motivation Our Research Methodology Results Conclusions
For patients: For caregivers:
Quality of life before and after the innovation (self-reported data)
Before the innovation Before the innovation
After the innovation After the innovation
16
Impact on quality of life
Sharing solutions, Improving Life 21

The problem we identified - summary
(i) Rate of innovations by patients is significant but
could be increased (patients could use some help
from others)
(ii) Innovations rarely diffuse, innovators don‟t have
incentives to diffuse and face a lot of resistance
22

Our project
An international, multilingual, open, free and non-profit
platform and social network to facilitate the sharing of
innovative solutions developed by patients or
caregivers of any disease
“We are very excited about this project”
23

The Management and Research Teams
Pedro Oliveira, Professor, Católica-Lisbon, Project Leader and Principal
Investigator
Helena Canhão, Professor of Rheumatology, Lisbon Medical School, University of
Lisbon and CHLN Chief Medical Officer
Tomás Fidelis | Managing Director
Leid Zejnilovic | Research and Operations Officer
Pierre Gein | Fundraising and Finance Officer

Sharing solutions, Improving Life
1st Patient Innovation Award to be announced Nov
2014
Objective: To create awareness of patient innovation and encourage
patients to actively search for solutions
What is eligible: Solutions developed by patient/caregiver (with or
without external collaboration) to help them deal with the disease
Criteria: Best solutions are those with highest potential of helping other
people deal with their diseases
Selection procedure:
1. Short list: PI team selects and ranks 10 finalists and prepares a
small report to present to Advisory Board
2. Advisory Board selects favorites
3. PI Award winner is announced in a public session in Lisbon
(for the 2nd edition, the short list will be defined by the “crowd”,
preferably patients of the same disease)
29

Crowdsourcing Week, Singapore, April 2014
When patients set out to help themselves and end up helping many
Thanks !

Pedro Oliveira - Patient Innovation: When Patients Set Out to Help Themselves and End Up Helping Many, CSWGlobal14

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