Presented at Crowdsourcing Week Global 2014 by Pedro Oliveira, Project Leader and Principal Investigator. Join us for CSW Global 2015! More Information: http://crowdsourcingweek.com/ and https://twitter.com/CrowdWeek
Systems Oriented Design
What is healthcare in the future? Design itself is an important power to make the healthcare system change a lot.
This project is aimed at exploring the future healthcare service in system thinking to make a holistic process and assumption of future system. Cardiovascular patients is a biggest group in the world. I hope working with this group can bring a lot of inspiration for other healthcare issue. In this project, I use strategy design, service design and interaction design method to create a hotlist service for cardiovascular patients out of the hospital. Nowadays a lot of people are suffering from longterm diseases and having high risk of cardiovascular. The food is a good way to address this problem. The meaning of the food and medicine are changing. The longterm medicine cause a mental problem at the beginning. The industry of medicine are struggling with their development, The goal of this project is to discuss the touchpoint food and medicine to address all the problems here, using system design methodology.
Systems Oriented Design
What is healthcare in the future? Design itself is an important power to make the healthcare system change a lot.
This project is aimed at exploring the future healthcare service in system thinking to make a holistic process and assumption of future system. Cardiovascular patients is a biggest group in the world. I hope working with this group can bring a lot of inspiration for other healthcare issue. In this project, I use strategy design, service design and interaction design method to create a hotlist service for cardiovascular patients out of the hospital. Nowadays a lot of people are suffering from longterm diseases and having high risk of cardiovascular. The food is a good way to address this problem. The meaning of the food and medicine are changing. The longterm medicine cause a mental problem at the beginning. The industry of medicine are struggling with their development, The goal of this project is to discuss the touchpoint food and medicine to address all the problems here, using system design methodology.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
It is said that, "Thy food is thy medicine." Hippocrates in his writings of Modern Medicine has mentioned this fact and has clearly said that what you eat will either provide you Health or Sickness !
Health promotion module
the WHO Global Health Promotion Conferences have established and developed the global principles and action areas for health promotion. Most recently, the 9th global conference (Shanghai 2016), titled ‘Promoting health in the Sustainable Development Goals: Health for all and all for health’, highlighted the critical links between promoting health and the 2030 Agenda for Sustainable Development. Whilst calling for bold political interventions to accelerate country action on the SDGs, the Shanghai Declaration provides a framework through which governments can utilize the transformational potential of health promotion.
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The workshop hosted medical professionals, communications experts, policy makers and technological innovators to discuss how new technologies can help to improve adult immunisation and the barriers to implementation and uptake.
For more information visit http://www.ilcuk.org.uk/index.php/events/immunisation_in_a_digital_world_futures_workshop
0 barcelona imim seminar hospital del mar new child public health 2013-05-29 defHein Raat, MD, PhD, MBA
Modern infant, child and adolescent public health: effective and tailor-made
Nowadays public health for infants, children and adolescents started at the end of the 19th century as a so-called social innovation, initiated by a coalition of medical professionals and citizens.
In this presentation, I discuss the phases of development of this public health care until now, and the epidemiological background why it is still warranted. A proposal is presented for further development in public health, by applying the principles of personalized medicine. The following elements of individualized medicine are possible: (1) Individualized, computer-adapted measurement of health status and health -related quality of life; (2) E-health in combination with face-to-face medicine, including web-based tailored health education; (3) Application of prediction models that are already used in clinical medicine.
Finally, the presentation illustrates that this model of public health may also apply to other target groups, such as older citizens.
Please, do not hesitate to contact me
Hein Raat h.raat@erasmusmc.nl
BIOsketch professor Hein Raat, MD, PhD, MBA
Hein Raat, MD, PhD, MBA, is a professor of infant, child and adolescent public health at the department of Public Health of Erasmus MC - University Medical Center Rotterdam, the Netherlands.
He was trained at the Free University Medical Center in Amsterdam and did his PhD on a public health study regarding prevention and care for alcohol problemns. He also studied at the University of Amsterdam, Erasmus University, and University of Rochester. He acted as epidemiologist and public health manager at the Municipal Health Center in Rotterdam. Since 1999, he is researcher and professor at Erasmus University Medical Center.
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30 minute talk at the Dartmouth Summer Institute on Informed Patient Choice. Very unusual talk - almost nothing about my cancer, lots about issues of who gets to say what's important.
Tell me and I forget, teach me and I remember, involve me and I learnSimon R. Stones
This presentation was delivered at the Glasgow Caledonian University School of Health and Life Sciences Research Seminar, to help inform the group who are currently developing their strategy for patient and public involvement and engagement.
It is said that, "Thy food is thy medicine." Hippocrates in his writings of Modern Medicine has mentioned this fact and has clearly said that what you eat will either provide you Health or Sickness !
Health promotion module
the WHO Global Health Promotion Conferences have established and developed the global principles and action areas for health promotion. Most recently, the 9th global conference (Shanghai 2016), titled ‘Promoting health in the Sustainable Development Goals: Health for all and all for health’, highlighted the critical links between promoting health and the 2030 Agenda for Sustainable Development. Whilst calling for bold political interventions to accelerate country action on the SDGs, the Shanghai Declaration provides a framework through which governments can utilize the transformational potential of health promotion.
Immunisation in a digital world - Futures WorkshopILC- UK
On Tuesday, 26th June the International Longevity Centre - UK (ILC-UK) hosted a one-day Futures Workshop on immunisation in a digital world in Brussels.
The workshop hosted medical professionals, communications experts, policy makers and technological innovators to discuss how new technologies can help to improve adult immunisation and the barriers to implementation and uptake.
For more information visit http://www.ilcuk.org.uk/index.php/events/immunisation_in_a_digital_world_futures_workshop
0 barcelona imim seminar hospital del mar new child public health 2013-05-29 defHein Raat, MD, PhD, MBA
Modern infant, child and adolescent public health: effective and tailor-made
Nowadays public health for infants, children and adolescents started at the end of the 19th century as a so-called social innovation, initiated by a coalition of medical professionals and citizens.
In this presentation, I discuss the phases of development of this public health care until now, and the epidemiological background why it is still warranted. A proposal is presented for further development in public health, by applying the principles of personalized medicine. The following elements of individualized medicine are possible: (1) Individualized, computer-adapted measurement of health status and health -related quality of life; (2) E-health in combination with face-to-face medicine, including web-based tailored health education; (3) Application of prediction models that are already used in clinical medicine.
Finally, the presentation illustrates that this model of public health may also apply to other target groups, such as older citizens.
Please, do not hesitate to contact me
Hein Raat h.raat@erasmusmc.nl
BIOsketch professor Hein Raat, MD, PhD, MBA
Hein Raat, MD, PhD, MBA, is a professor of infant, child and adolescent public health at the department of Public Health of Erasmus MC - University Medical Center Rotterdam, the Netherlands.
He was trained at the Free University Medical Center in Amsterdam and did his PhD on a public health study regarding prevention and care for alcohol problemns. He also studied at the University of Amsterdam, Erasmus University, and University of Rochester. He acted as epidemiologist and public health manager at the Municipal Health Center in Rotterdam. Since 1999, he is researcher and professor at Erasmus University Medical Center.
EcoHealth approach to control of zoonotic emerging infectious diseases in Sou...ILRI
Presented by Jeff Gilbert at the second scientific Asia and the Pacific symposium on "Sustainable diets: Human nutrition and livestock", Ulaanbaatar, Mongolia, 21 August 2013.
Dr Nicolas Sireau, Chairman and CEO, AKU Society, Chairman and Co-founder, Findacure, a speaker at the Evolution Summit 2014, discusses 10 steps from Black Bone Disease
Dartmouth Summer Institute for Informed Pt Choice (Let Patients Help Decide W...e-Patient Dave deBronkart
30 minute talk at the Dartmouth Summer Institute on Informed Patient Choice. Very unusual talk - almost nothing about my cancer, lots about issues of who gets to say what's important.
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Chandrima Spa Ajman is one of the leading Massage Center in Ajman, which is open 24 hours exclusively for men. Being one of the most affordable Spa in Ajman, we offer Body to Body massage, Kerala Massage, Malayali Massage, Indian Massage, Pakistani Massage Russian massage, Thai massage, Swedish massage, Hot Stone Massage, Deep Tissue Massage, and many more. Indulge in the ultimate massage experience and book your appointment today. We are confident that you will leave our Massage spa feeling refreshed, rejuvenated, and ready to take on the world.
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Pedro Oliveira - Patient Innovation: When Patients Set Out to Help Themselves and End Up Helping Many, CSWGlobal14
1. Crowdsourcing Week, Singapore, 7-11 April 2014
When patients set out to help themselves and end up helping many
Pedro Oliveira
Professor, Católica-Lisbon School of Business and Economics | Project Leader, Patient Innovation
poliveira@ucp.pt | poliv@mit.edu
2. ‣ 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?
2
2Sharing Solutions, Improving Life
3. FORD T
converted by users into snowmobiles, trucks and tractors
3
3Sharing Solutions, Improving Life
4. FORD T
Not all user innovation become successful products
4
4Sharing Solutions, Improving LifeSharing Solutions, Improving Life
5. Users respond to needs
5
Users respond to needs
5Sharing Solutions, Improving Life
6. South-North Diffusion:
Mobile banking in the Philippines
An archipelago of 7,101 islands
80% make less than $2 / day
70% have access to cell phone
70% are “unbanked”
6
If necessity is the mother of invention, then we should look for innovatio
contexts of high necessity…
6Sharing Solutions, Improving Life
7. 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.
7
Patients of chronic diseases often innovate
Sharing Solutions, Improving Life 7
Often patients set out to help themselves and
end up helping many
8. Sharing Solutions, Improving Life
Examples of patient innovations (1)
8
Personalized External Aortic Root
Support
British engineer,
Tal Golesworthy (a
Marfan syndrome
patient), designed
own heart implant
and saved own life
(2004)
9. Invented the hug
machine to calm
people who are
overly sensitive to
human touch
Temple Grandin (high-functioning autism)
9
Sharing Solutions, Improving Life
Examples of patient innovations (2)
9
10. 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
Sharing Solutions, Improving Life
Examples of patient innovations (3)
10
11. ‣ 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
Sharing Solutions, Improving Life
Examples of patient innovations (4)
11
12. ‣ 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
Sharing Solutions, Improving Life
Examples of patient innovations (5)
12
13. 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
Examples of patient innovations (6)
Sharing Solutions, Improving Life 13
14. 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
14
Sharing Solutions, Improving Life
Examples of patient innovations (7)
14
15. 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
Sharing Solutions, Improving Life
Examples of patient innovations (8)
15
16. Cystic Fibrosis
treatments
‣ 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
Sharing Solutions, Improving Life
Examples of patient innovations (9)
16
17. 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.”
Sharing Solutions, Improving Life
Examples of patient innovations (10)
17
18. 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
Examples of patient innovations (11)
18
19. 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)
20. MSc Thesis Defense | Matilde Czernin | 01/11/13
Motivation Our Research Methodology Results Conclusions
55%
(337)
32%
(159)
13%
(62)
45%
(221)
Passive
Active
Active only
PI
N = 496
15
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.
Sharing solutions, Improving Life 20
Survey 500 patients/caregivers of rare
diseases
21. 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
16
Impact on quality of life
Sharing solutions, Improving Life 21
22. Sharing Solutions, Improving Life
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
22
23. 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
Sharing Solutions, Improving Life
“We are very excited about this project”
23
27. The Management and Research Teams
Pedro Oliveira, Professor, Católica-Lisbon, Project Leader and Principal
Investigator
Helena Canhão, Professor of Rheumatology, Lisbon Medical School, University of
Lisbon and CHLN Chief Medical Officer
Tomás Fidelis | Managing Director
Leid Zejnilovic | Research and Operations Officer
Pierre Gein | Fundraising and Finance Officer
Sharing Solutions, Improving Life 27
29. Sharing solutions, Improving Life
1st Patient Innovation Award to be announced Nov
2014
Objective: 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 Board
2. Advisory Board selects favorites
3. 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)
29
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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