Patients Driving Health Innovation - Dr Helena Canhao, Patient Innovation Portugal - October 4th...

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

Contribution of patients and their caregivers

Patient-Innovation.com

Patient-centered medicineParticipatory Medicine

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

the PATIENT INNOVATION potential

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

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)


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)

implemented in more than 70 patients


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


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


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.


Lisa Crites and the Shower Shirt

Michael Seres, UK


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

Caregivers

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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


Kylie’s fatherthe intravenous backpack

Collaborations

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A way to foster collaboration: the case of Ivan Owen

Sharing Solutions, Improving Life19

Ivan Owen

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

https://www.youtube.com/watch?v=AvrVJs8W59c&index=40&list=PL4LkFyzWy7hPXPywkcBOoWTFhJNu1IWYy

https://www.youtube.com/watch?v=AvrVJs8W59c&index=40&list=PL4LkFyzWy7hPXPywkcBOoWTFhJNu1IWYy

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"

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

- 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

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Solutions published and approved

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Science GalleryDublin, Jan-Fev 2018


Team & Advisory Board

Sharing solutions, Improving Life

Patient Associations

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WEBSUMMIT @LISBON, PORTUGALNOVEMBER 10TH

patient-innovation.comwww.facebook.com/PatientInnov

twitter.com/PatientInnov

Thanks!

Patients Driving Health Innovation - Dr Helena Canhao, Patient Innovation Portugal - October 4th...

Health & Medicine

Transcript of Patients Driving Health Innovation - Dr Helena Canhao, Patient Innovation Portugal - October 4th...