pedro oliveira - patient innovation: when patients set out to help themselves and end up helping...

Crowdsourcing Week, Singapore, 7-11 April 2014

When patients set out to help themselves and end up helping many

Pedro OliveiraProfessor, Católica-Lisbon School of Business and Economics | Project Leader, Patient Innovation

[email protected] | [email protected]

‣ 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?

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FORD T converted by users into snowmobiles, trucks and tractors

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FORD TNot all user innovation become successful products

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Users respond to needs

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Users respond to needs


South-North Diffusion: Mobile banking in the Philippines

An archipelago of 7,101 islands80% make less than $2 / day70% have access to cell phone70% are “unbanked”

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If necessity is the mother of invention, then we should look for innovation in 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.

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Patients of chronic diseases often innovate

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Often patients set out to help themselves and end up helping many

Sharing Solutions, Improving Life

Examples of patient innovations (1)

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Personalized External Aortic Root SupportBritish 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)

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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



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‣ 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



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‣ 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



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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

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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



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Cystic Fibrosistreatments

‣ 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



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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.”



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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) Sharing Solutions, Improving Life


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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)

PassiveActiveActive onlyPI

N = 496

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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.

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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

3,2

5,1 5,0

3,3

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Impact on quality of life

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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

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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”

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www.patient-innovation.com

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www.patient-innovation.com

The Management and Research TeamsPedro Oliveira, Professor, Católica-Lisbon, Project Leader and Principal InvestigatorHelena Canhão, Professor of Rheumatology, Lisbon Medical School, University of Lisbon and CHLN Chief Medical Officer Tomás Fidelis | Managing DirectorLeid Zejnilovic | Research and Operations Officer

Pierre Gein | Fundraising and Finance Officer


The Patient Innovation Award

Sharing solutions, Improving Life

1st Patient Innovation Award to be announced Nov 2014Objective: 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 Board2. Advisory Board selects favorites3. 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)

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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...

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