patients driving health innovation - dr helena canhao, patient innovation portugal - october 4th...
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how patients set out solutions for themselves and end up to help many others
Helena CanhãoDublin, 4 Oct 2016
Patient-led Innovation through digital platforms
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Contribution of patients and their caregivers
Patient-Innovation.com
Patient-centered medicineParticipatory Medicine
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Research documents that patients often innovate by developing new solutions, sometime all by themselves, to help them manage the diseases that afflict them.
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Patients of chronic diseases often innovate
Sharing Solutions, Improving Life
Often patients set out to help themselves and end up helping many
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Patients of chronic diseases often innovate
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the PATIENT INNOVATION potential
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Oliveira, Zejnilovic, Canhão and von Hippel (2015)
28%
8%64%
new to the patient new to the world did not innovate
n = 500
Patients and caregivers often develop innovative solutions to help them cope with their disease
Sharing Solutions, Improving Life 5
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Quality of life differences Scale 1-5
Patientsmean (SD)
Caregiversmean (SD)
Products 2.2 (1.5) 1.7 (1.4)
Services 1.8 (1.4) 2 (1.7)
Total 2 (1.4) 1.9 (1.6)
The solutions significantly improve their quality of life...
New to the world
New to the patient
Shown it locally to other patients 89% 92%Shown it to medical professionals 5% 2%Shared the info on a website/blog/social network 37% 28%Shared it through media 16% 8%other 25% 13%
Quality of life of both patients and caregivers improves 2 points (out of a 5 points scale)
But they rarely diffuse (e.g. only 5% are show to medical professionals)
Oliveira, Zejnilovic, Canhão and von Hippel (2015)
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Patients
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Personalized External Aortic Root Support
Tal Golesworthy, a British engineer and Marfan syndrome patient, developed an aortic support and fixed his own problem (2004)
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implemented in more than 70 patients
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Amit Goffer (Israel), founder of Argo Medical Technologies, was paralyzed in a car crash and used his skills as an engineer to develop the electronic trousers.
Approved by FDA
ReWalk
Sharing Solutions, Improving Life
Electronic trousers
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Low frequency generator for bronchial drainage
‣ Louis Plante (cystic fibrosis 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
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Lisa was diagnosed with breast cancer. Following a mastectomy, she was advised to avoid showering in order to prevent infection through the drain sites. She created a water-resistant garment, the Shower Shirt, to enable patients in a similar situation to shower normally.
Shower shirt
The Shower Shirt has obtained FDA approval and already crossed geographic borders to reach 36 countries.
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Lisa Crites and the Shower Shirt
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Michael Seres, UK
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Michael suffers from Crohn’s disease and did a ileostomy after a bowel transplant.He struggles for never knowing whether the bag’s stool is full.He developed the osteom-i alert, a sensor associated to an app that monitors bag’s volume and sends information to his mobile phone.
Osteom-i alert
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Caregivers
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Sharing Solutions, Improving Life
A mobility device for children with motor impairment to stand and walk
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Debby Elnatan’s youngest son was born with cerebral palsy. She developed the Upsee
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Sharing Solutions, Improving Life 17
Kylie’s fatherthe intravenous backpack
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Collaborations
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A way to foster collaboration: the case of Ivan Owen
Sharing Solutions, Improving Life19
Ivan Owen
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Nuno
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Giving a 3D printed hand and arm to a 7-years old, Nuno • https://www.youtube.com/watch?v=AvrVJs8W59c&index=40&list=PL
4LkFyzWy7hPXPywkcBOoWTFhJNu1IWYy
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The Patient Innovation Platform:
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
https://patient-innovation.com
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“We are very excited about this project”
Semifinalist only non-US among 475 candidates
A start-up to follow…
"Patient Innovation is an impressive platform"
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Sharing solutions, Improving Life
Screening for compliance with ‘terms of service’
x To the best of my knowledge the content of this post conveys accurate and true information. The post does not contain any bad language, offensive content, inappropriate proposals, commercial or advertising intent, drugs, chemicals or something that is visibly and intrinsically dangerous. I am not disclosing my personal contacts (e.g. email, phone and address)
The screening is aimed at preventing bad language, offensive and inappropriate content, commercial/advertising intent, drugs, chemicals, intake/topical substances, invasive devices, or other visibly and intrinsically dangerous proposals.“Screening” is NOT intended to do any medical validation.
ScreeningSubmission
(if user agrees with sentence below)
Posted in PI platform and
made visible to all
Wait for screening
Yes
No, it does not comply with terms of services
This applies only to posts (not to comments)
Not published in the platform
(may get a R&R)
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+6001,5 innovations/day
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- Out of 1200 submissions; about half are rejected at “screening”- From over 41 countries from US to South Korea
+600 patient innovations were collected and curated
Feb-14
May-14
Aug-14
Nov-14Fe
b-15
May-15
Aug-15
Nov-15Fe
b-16
May-16
0
100
200
300
400
500
600
Solutions published and approved
num
ber o
f Sol
ution
s
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Science GalleryDublin, Jan-Fev 2018
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Sharing Solutions, Improving Life
Team & Advisory Board
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Sharing solutions, Improving Life
Patient Associations
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WEBSUMMIT @LISBON, PORTUGALNOVEMBER 10TH
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patient-innovation.comwww.facebook.com/PatientInnov
twitter.com/PatientInnov
Thanks!