saude surf

Transcription

saude surf

Como os doentes conseguem ajudar-se a si próprios e
acabam por ajudar muitos mais
Leid Zejnilović, Ph.D.
Research and operations Officer
O Caso particular da Inovação na área da Saude
Introdução
• Saúde é transversal a todos os individuos e
sociedades
• Os gastos em saude atingem quase 20% PIB em
paises desenvolvidos
• O acesso a produtos inovadores é desigual
• A melhoria de técnicas, processos e
procedimentos pode ter real impacto nos
cuidados e saúde das populações
Sharing Solutions, Improving Life
3
Inovação em saúde
Relatório de Primavera 2008 – Sistema de Saúde Português – Riscos e Incertezas. OPSS, 2008‐10‐09
4
Participatory Medicine
Patient-centered medicine
contributo dos doentes e dos seus
cuidadores
Patient-Innovation.com
Doentes-inovadores.com
Patients of chronic diseases often innovate
Research documents that patients often innovate by developing new
solutions, sometime all by themselves, to help them manage the
diseases that afflict them.
Often patients set out to help themselves and
end up helping many
6
6
7
New to the
respondent
(n = 223)
New to the
world
(n = 40)
8%
Total
(n = 263)
52% of 500
respondents
Equipment (medical &
non-medical / aid
devices)
Treatments
2%
22%
5%
57%
8%
49.%
Strategy / behavior
41 %
70%
46%
Total (% of 263)
85%
15%
100%
• 263 (52.6%) of our survey respondents reported developing and
using a solution to improve management of their diseases which they
thought to be novel.
• 40 (8%) were evaluated as indeed being novel by two medical
experts
• 44.6% were already known to medicine, although new to the
patients who recreated them.
8
Results – value (as seen by patients vs
experts)
9
Fall-offs of innovation activity – multiplecase study
15 interviews with Patients from Alcoitão and
Patient Innovation, 30 cases.
Source: Zejnilovic, Oliveira, Canhão,
“Innovations by and for patients, and their
place in the future health care system”, a
chapter in Boundaryless Hospital, Springer,
2015 (in press).
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Frequency of Innovation activity
Reported frequencies along the
innovation process stages
100%
64%
53%
50%
3%
0%
Stage 1: idea
Rare diseases
2%
Stage 2:
solution
17%
1%
Stage 3:
diffused
Rheumatic diseases
Stage 1:
idea
Stage 2:
solution
Stage 3:
diffused
Rare
diseases
(n=500)
320
263
84
Rheumatic
diseases
(n=822)
27
18
8
Rheum. D
N=6000
x
72
39
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Doentes
14
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Tal Golesworthy
• Tal Golesworthy, por sofrer de Síndrome de
Marfan, necessitava de ser submetido a uma
cirurgia cardíaca. Ele aproveitou a sua experiência
profissional em engenharia e o seu conhecimento
em canalizações para desenvolver com o seu
médico um suporte externo para a raiz da aorta –
PERSONALIZED EXTERNAL AORTIC ROOT
SUPPORT (PEARS). Desde que este suporte foi
implementado no coração do Tal há dez anos
atrás, a mesma técnica já foi implementada em
mais de 45 doentes para prevenir a rotura da
aorta.
Doente
implemented in
more than
46 patients
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18
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Electronic trousers
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
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Amit Goffer
• Caso: Amit Goffer sofreu um acidente de carro
em 1997, ficando tetraplégico. Desde então, tem
se dedicado a desenvolver um exosqueleto para
que indivíduos paraplégicos consigam andar ReWalk.
• Difusão: Em Agosto de 2008, os ensaios
clínicos para o ReWalk terminaram com grande
sucesso em Israel. Em Outubro de 2014 obteve
a aprovação da FDA.
Doente
Richard Bernstein and diabetes
‣ 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
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22
Herb Kern and Seasonal Affective
Disorder
‣ 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
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23
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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Louis Plante
• Louis Plante sofre de Fibrose Quística. Louis
costumava passar 4 horas por dia em cinesioterapia
para minorar o problema, até que durante um concerto
reparou que a vibração produzida pelas colunas de som
provocavam um efeito positivo. Através da sua
experiência em electrónica, Louis desenvolveu o
FREQUENCER™, um dispositivo que produz ondas
sonoras para ajudar na limpeza dos pulmões. O
FREQUENCER™ é o primeiro dispositivo que produz
vibrações ressonantes (acústicas) de baixa energia,
reduzindo a viscosidade do muco, permitindo aumentar
o fluxo de muco em doentes com Fibrose Quística.
Doente
Examples of CF patient innovations
“Saltwater” treatment for Cystic
Fibrosis
‣
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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26
Temple Grandin (high-functioning
autism)
Invented the hug
machine to calm
people who are overly
sensitive to human
touch.
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Shower shirt
Lisa Crites and the Shower Shirt
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 waterresistant garment, the Shower
Shirt, to enable patients in a
similar situation to shower
normally.
The Shower Shirt has obtained FDA approval and already
crossed geographic borders to reach 36 countries.
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Cuidadores
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A mobility device for children with motor
impairment to stand and walk
Debby Elnatan’s
youngest son was
born with cerebral
palsy. She
developed the
Upseee
30
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Joaquina Teixeira
• O filho de Joaquina, Gonçalo, sofre de Síndrome
de Angelman. Apesar de ter 6 anos e conseguir
andar, o Gonçalo recusava manter-se de pé. Um
dia numa festa, a Joaquina reparou que os balões
de hélio dispostos no tecto captavam a atenção do
Gonçalo e faziam com que ele se levantasse para
os tentar agarrar. Nesse mesmo dia, a Joaquina
espalhou balões de hélio por toda a casa e
observou o seu filho a saltar e a andar para
apanhar os balões.
Cuidador
Examples of CF patient innovations
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.”
33
33
Colaboradores
34
A way to foster collaboration:
the case of Ivan Owen
Ivan Owen
35
36
Ivan Owen
• Ivan Owen publicou um vídeo sobre umas “mãos
mecânicas”, que ele próprio tinha desenvolvido, no
YouTube. Um carpinteiro sul-africano, que tinha
perdido alguns dedos num acidente, contactou-o e
pediu que o ajudasse a desenhar e a desenvolver
uma mão prostética de baixo custo. Ivan aceitou o
desafio e ainda desenvolveu mãos prostéticas de
baixo custo para crianças. Partilhou os ficheiros
digitais usados para produzir estas mãos em
impressoras 3D. O seu trabalho inspirou uma enorme
e em contínuo crescimento rede de voluntários e
“makers” comprometidos em fazer a diferença. (e.g. eNABLE).
Colaborador
38
39
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
Plataforma plurilingue, sem fins lucrativos e de livre-acesso
(http://patient-innovation.com ou http://doentes-inovadores.com)
onde doentes, cuidadores e colaboradores podem partilhar
as suas inovações.
Resultados:
•
•
•
•
Lançamento da Plataforma: Fevereiro 2014
Análise anual: Fevereiro 2015
Número total de soluções: 260
Número total de soluções na área de Medicina Física e Reabilitação: 101
“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"
42
Screening for compliance with ‘terms of service’
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.
Not published in
the platform
(may get a R&R)
No, it does not comply with terms of
services
Submission
(if user agrees with
the sentence below)
Wait for
screening
Screening
Yes
Posted in
PI platform and
made visible to all
This applies only to posts
(not to comments)
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)
Sharing solutions, Improving Life
44
300 innovations in about 16 months
Team, Advisory Board, Supporters
Our Advisory Board
47
What is it that the patients do to diffuse?
Still a problem!
1) Visual: Is there a visual support (picture/video/sketch) of the innovation?
2) Compatibility: Are reasons to innovate shared?
3) Complexity of Use: Is there an explanation on how to use the innovation
(or is it obvious)?
4) Relative Advantage: Is the innovation compared with alternatives?
5) Observability: Are the beneficial outcomes of using the innovation
explicit?
6) Trialability: Is it clear how to acquire/replicate innovation?
7) Hyperlink: Is there a link for additional information?
Studying 263 solutions at Patient-innovation.com and related sites,
the level of comminication is low!
Master thesis by Joana Roldão @ Catolica-Lisbon School of Business and Economics
48
Patient Associations
Thank you
www.patient-innovation.com
Catherine KK Patton – i-Port
• Diagnosed with type 1 diabetes after being pregnant
• Story: Injection was the only solution for people with type 1
diabetes until Patton decided to innovate. She developed a
small, circular, low-profile device that once applied, the
insertion needle is removed and only the tiny soft tube
remains below the skin, working as medication channel into
the subcutaneous tissue.
Product: i-Port®
Diffusion: Founded Patton Medical
Devices in 2004, producing the i-port®.
In September 2005, FDA approved this
device for patients who have to
administer multiple daily SC injections
of physician-prescribed medications.51
Hugh Herr – Bionic legs
Associate Professor of Media Arts and Sciences at MIT
Story: Hugh Herr was a climbing prodigy. In 1982 his legs had to be
amputated. “You’re never going to rock climb again”, made Hugh return
home, set up a workshop in the garage and began to develop climbing
protheses. Product: Bionic Legs, Powerfoot BiOM
Diffusion: At MIT lab he is revolutionizing prosthetics. Founder of a new
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startup called iWalk.
Klaus Rausch - Handcycling
• Story: Klaus Rausch is restricted to
a wheelchair, however he loves
handcycling. His wish to continue
doing what he enjoys made him
came up with Do-It-Yourself
Handcycle idea. As a wheelchair
user he knows the advantage of
handcycles, therefore he projected
a low (almost no) costs, simple
technology, poor roads passable,
faster than a wheelchair, open
source handcycle.
Product: Do-It-Yourself Handcycle.
Diffusion: As he would like to help other handicapped people to get
the same experience (within their possibilities), he put his ideas as
“open source without commercial use of the general public”.
53
Patrick Mayer - Wheelblades
• Story: Patrick has been depending on his
wheelchair for 12 years. He was surprised to
find out that there was not a single,
reasonably priced mobility aid on the market
to enjoy the snow. As a wheel chair driver he
wanted a maximum of mobility and flexibility
in any weather and developed Wheeblades.
• Diffusion: In 2012, Mayer was seeking for
investors. He was supported for the Institution
IPEK that helped him to design the current
design. And he has also support from the
Swiss foundation for children suffering from
cerebral palsy.
Wheelblades won the Reddot design award 2013 and 2014. They are
now manufactured by Wheelblades GmbH.
54
Isabel Mateus – Wii fit
• Story: Isabel Mateus improved her
husband’s QoL. He suffers from Parkinson
Disease. One way of minimizing the impact
of Parkinson disease is through physical
therapy, in order to keep the patient active.
However, he thought physical therapy a
boring and monotonous activity. That is
how she came up with the idea of making
him play Wii-Fit 2 sessions per week. It
provides a moment of excitement and fun,
managing to simultaneously increase his
muscle mass and balance.
• Solution: Wii-Fit games.
• Diffusion: She shared her solution on
Patient Innovations’ platform.
55
Susana Candeias – Hair gel
• Susana’s daughter suffers from Cri du
Chat, a very rare genetic disorder.
Amongst its symptoms are severe
cognitive, speech, and motor delays,
behavioural problems, or poor growth.
• Story: Susana’s daughter has a fixation
with hair. When she gets more agitated
her automatic response is to pull both
her and other people’s hairs. Her
mother noticed, though, that she avoids
touching in wet hair. So, to avoid having
her pulling her own hair too hard, she
started putting hair gel on it.
56
Drew Ann Long – Caroline’s cart
• Story: Drew Ann Long created a shopping
cart for special needs children. It is named
after Caroline, her daughter, who suffers
from Rett Syndrome. In order to avoid
having to maneuver a wheelchair and a
traditional grocery cart at the same time,
Drew Ann Long designed a shopping cart in
a way that her daughter would not
outgrow it.
• Product: Caroline’s Cart.
• Diffusion: Drew’s mission was to make
Caroline’s Cart available to retailers
everywhere. Technibilt company made her
dream true.
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Drew Ann Long – Caroline’s cart
58
Kezia and Mike Fitzgerald - CareAline
• Story: Kezia created the CareAline® Sleeve and Wrap for her
daughter, Saoirse, who was battling Neuroblastoma at Boston
Children’s Hospital. The garments helped not only their own
daughter, but other children who had PICC and central lines for
treatment.
• Product: CareAline® Sleeves and Wraps
• Diffusion: After the death of their daughter in 2011, Mike and
Kezia created CareAline® Products, LLC to make the sleeves and
wraps available to all patients who need them. The Fitzgeralds
are currently working to make CareAline® Sleeves and Wraps
the standard of care in hospitals and medical facilities for all
patients with PICC and central lines.
59
Kezia and Mike Fitzgerald - CareAline
60
Carlos Nogueira – collaboration to surf
• Story: Carlos had a paraplegic friend who
would love go to the see. He discovered a
Brazilian surfer Otaviano Bueno, who
became tetraplegic in an accident.
Otaviano tried to design his own board to
go to the sea. They exchanged emails with
technical information and started to
collaborate.
• Product: Prancha dos Césares – (Board of
the “Caesars”)
• Diffusion: Carlos Nogueira joined
Associação Salvador and Surf Academia
and together they are helping more
people going to the sea and surf.
61
Carlos Nogueira – collaboration to surf
62
Tyron Swan
• Tyron Swan’s friend Pascale
Honore is paraplegic.
• Story: Pascale Honore had a
dream of doing surf, but a car
accident left her paraplegic.
Her friend Tyron Swan,
knowing her passion for the
sport got the idea of duct
tapping her on his back and
taking her to surf with him.
• Solution: Duct tape harness.
• Diffusion: They made a video
and posted it on Vimeo and
the video got viral. Now they
are helping more people in
Pascale Honore’s situation.
63

saude surf

Transcription

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