Patients Driving Health Innovation - Dr Helena Canhao, Patient Innovation Portugal - October 4th 2016
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Dr Canhao described case studies of patients who had developed their own technology solutions to their own health problems.
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Patients Driving Health Innovation - Dr Helena Canhao, Patient Innovation Portugal - October 4th 2016
- 1. how patients set out solutions for themselves and end up to help many others Helena Canhão Dublin, 4 Oct 2016 Patient-led Innovation through digital platforms
- 2. Contribution of patients and their caregivers Patient-Innovation.com Patient-centered medicine Participatory Medicine
- 3. Research documents that patients often innovate by developing new solutions, sometime all by themselves, to help them manage the diseases that afflict them. 3 Patients of chronic diseases often innovate Sharing Solutions, Improving Life Often patients set out to help themselves and end up helping many 3 Patients of chronic diseases often innovate
- 4. the PATIENT INNOVATION potential
- 5. 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
- 6. Quality of life differences Scale 1-5 Patients mean (SD) Caregivers mean (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) Sharing Solutions, Improving Life 6
- 7. Patients 7
- 8. Sharing Solutions, Improving Life 8 Personalized External Aortic Root Support Tal Golesworthy, a British engineer and Marfan syndrome patient, developed an aortic support and fixed his own problem (2004)
- 9. implemented in more than 70 patients Sharing Solutions, Improving Life 9
- 10. 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 10
- 11. 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 Sharing Solutions, Improving Life 11
- 12. 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. Sharing Solutions, Improving Life 12 Lisa Crites and the Shower Shirt
- 13. Michael Seres, UK Sharing Solutions, Improving Life 13 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
- 14. Caregivers 14
- 15. Sharing Solutions, Improving Life A mobility device for children with motor impairment to stand and walk 15 Debby Elnatan’s youngest son was born with cerebral palsy. She developed the Upsee
- 16. Sharing Solutions, Improving Life 16
- 17. Sharing Solutions, Improving Life 17 Kylie’s father the intravenous backpack
- 19. A way to foster collaboration: the case of Ivan Owen Sharing Solutions, Improving Life 19 Ivan Owen
- 20. 20
- 21. Nuno Sharing Solutions, Improving Life 21
- 22. Sharing Solutions, Improving Life 22
- 23. 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 23
- 24. 24
- 25. 25
- 26. 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
- 27. 27 “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"
- 29. 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. Screening Submission (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) 29
- 31. - 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 0 100 200 300 400 500 600 Feb-14 Jun-14 Oct-14 Feb-15 Jun-15 Oct-15 Feb-16 numberofSolutions Solutions published and approved Sharing Solutions, Improving Life 31
- 32. 32
- 33. Sharing Solutions, Improving Life 33 Science Gallery Dublin, Jan-Fev 2018
- 34. Sharing Solutions, Improving Life Team & Advisory Board
- 35. Sharing solutions, Improving Life Patient Associations
- 36. 36
- 37. 37
Editor's Notes
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- I begin by showing some scattered examples of patient innovation, a sample of those present in existent literature on the subject. Two examples worth highlighting are Dr. Bernsteins’, the first person to read and manage daily his blood sugar levels + Tal Golesworthy, who saved his life by creating a coating device for his aorta with an anheurism, also saving later more than 20 people. This phenomenon has also already been acknowledged by recognised individuals in the areas of innovation and medicine, such as Prof. Eric von Hippel, father of the user innovation area of knowledge and Sir Richard Roberts, Nobel Laureate
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- Patients and caregivers of rare chronic diseases often develop new-to-the-world solutions (8% of sample of 500) These innovations significantly improve their quality of life (on a 1-5 scale) Patients and caregivers of rare chronic diseases often develop new-to-the-world solutions that improve their life quality (8% of sample of 500)
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- When confronted with a chronic disease that has a high mortality rate or changes day-to-day habits, a person may simply accept “fate” and give up. That was not a case of Amit Goffer. He was paralyzed in a car crash, but instead of accepting his disability, he used his skills as an engineer to invent a device which could help him get out of his wheelchair. He invented electronic trousers ReWalk (Figure 7) that, with computer and complex construction, help paraplegics to stand and walk. It is now available in rehabilitation hospitals and centers in Europe and in the USA. He is also the founder of a company that produces the device. Among patient innovations, there are “old” examples of devices we take for granted in our daily life since they have become so common. Bifocals were invented by Benjamin Franklin, one of the Founding Fathers of the United States, who started to have trouble seeing both up-close and at a distance as he got older. Being tired of switching between two types of glasses, he thought of a way to have both types of lenses in one frame. Another interesting example is the band aid. Earle Dickson’s wife often cut herself while doing housework and cooking. Dickson found that the gauze stuck to a wound with tape didn't stay on her active fingers. One day, he took the gauze and placed it in the center of the tape and covered it with crinoline to keep it sterile and safe. This was the invention of the band aid
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