CELEBRATING 3 YEARS OF PATIENT INNOVATION Report 2014-2017
www.patient-innovation.com 2 Celebrating 3 Years of Patient Innovation 2014
CELEBRATING 3 YEARS OF PATIENT INNOVATION
2017
3 Celebrating 3 Years of Patient Innovation
To all patients, caregivers, and collaborators that made this journey possible. Thank you.
patient-innovation.com facebook.com/PatientInnov • twitter.com/PatientInnov • youtube.com/c/patientinnovationpi Contents
OUR PROJECT 8
LETTER FROM THE TEAM 10
1 / PATIENT INNOVATION PLATFORM 12 The purpose of the Patient Innovation Platform 13 How it works 18 Launch Event 22 Platform evolution 24
2 / PATIENT INNOVATION AWARDS 26 The 1st Patient Innovation Awards 28 The 2nd Patient Innovation Awards 34 The 2nd Patient Innovation Awards @ Web Summit 36 The Patient Innovation Awards Forum 42
3 / GIVING A HAND 44
4 / ACTIVITIES 48 Health Innovation Challenge 50 Patient Innovation recognized at summit with 51 UN Secretary-General Ban Ki-moon World Arthritis Day 52 SOS Refugees by Patient Innovation 54 Celebrating our 2nd year anniversary 56 Non-profit Startup of The Year 2016 58 AACSB distinguished Patient Innovation as 59 Entrepreneurship Spotlight Challenge Honoree (2017) 5 / BEYOND THE LAB EXHIBITION 60
6 / PATIENT INNOVATION RESEARCH 66 Research and Outreach 68 What we learned so far 70 Conference presentations 72 Open and User Innovation 2015 76
7 / IN THE MEDIA 78 We are all over the news! 80
8 / PATIENT INNOVATION TEAM 88 Main team 90 Advisory Board team members 92 Advisory Board meetings 94 Supporters 96 Local Chapter Berlin 98 Partnerships 100
WHAT OUR COMMUNITY HAS BEEN SAYING 102 8 Celebrating 3 Years of Patient Innovation Our Project
The Patient Innovation project is an interna- tional, multilingual, non-profit platform, and social network that connects patients and care- givers, and enables the sharing of their solu- tions. If not shared, these strategies, treatments, devices, and knowledge would probably remain unknown to many patients, not fulfilling their potential to change the lives of others. We want to be the means to that sharing. We want to help people change their own lives and the lives of many others through sharing.
Celebrating 3 Years of Patient Innovation 9 Letter from the Team
10 Celebrating 3 Years of Patient Innovation 01 Dear all,
Patient Innovation was developed in 2014 with the purpose of sharing and helping to improve lives. In these three years we have managed to reach a wide audience. We celebrated patients and caregivers through the 1st Patient Innovation Awards in July 2015 and the 2nd edition of the Patient Innovation Awards in November 2016. The number of solutions shared on our platform has been increas- ing every day. In 2017, we reached a new milestone: 750 solutions on the platform! Through sharing, we all grow. Each solution shared becomes a piece of the Patient Innovation heart. It has been three years since we began working to break down economic, geographical, and language barriers, by improving our platform each day, providing more solutions, and increasing aware- ness. By doing so, we are helping to improve the lives of members of the Patient Innovation community worldwide.
All the best from the Patient Innovation team.
01 From left to right: Salomé Azevedo, Ana Duarte, Maria João Gonçalves, Miguel Amaral Nunes, Pedro Oliveira, Patrícia Rodrigues, Tina Drusay, Helena Canhão, Leid Zejnilovic and João Pedro Covas.
Celebrating 3 Years of Patient Innovation 11 12 Celebrating 3 Years of Patient Innovation Patient Innovation1 Platform
“ This is an outstanding social media use that should help many disadvantaged people.”
— Sir Richard Roberts CHIEF SCIENTIST, NEW ENGLAND BIOLABS NOBEL LAUREATE IN PHYSIOLOGY OR MEDICINE 1993 PATIENT INNOVATION ADVISORY BOARD MEMBER
Celebrating 3 Years of Patient Innovation 13 1 / Patient Innovation Platform The purpose of the Patient Innovation Platform
The purpose of the Patient Innovation Platform
his project is the result However, it was then discovered The problem or challenge ex- Tof a multidisciplinary re- that these solutions, developed by perienced by a user (patient, ca- search, which involves the areas patients, caregivers, and collabo- regiver, or collaborator) may be of management, health scienc- rators, weren’t being shared. similar to that of many other pa- es, engineering, and law. The in- tients and caregivers. vestigation started in 2011, led Founded and led by So the solution developed to by CATÓLICA-LISBON School of Prof. Pedro solve this problem could be appli- Business & Economics, in partner- cable to many other people. Post- ship with the MIT, Sloan School of Oliveira and Prof. ing and sharing your solution will Management, and the Carnegie Helena Canhão contribute to updating and im- Mellon University. proving this plaform, helping oth- It became clear that there was ers to solve their own challenges. Currently, in Portugal, the pro- a need to create an online plat- ject also includes the partnership form that made the diffusion of of the Instituto de Medicina Molec- these solutions possible. ular, the Faculty of Medicine Uni- And from this, Patient Innova- versity of Lisbon and Nova Medical tion was born. School of New University of Lis- bon. The project, founded and led An open platform for patients by Prof. Pedro Oliveira and Prof. (those who develop solutions Helena Canhão, has received sup- for themselves), caregivers port from several reputed mem- (those who develop solutions for Anyone bers of the scientific community, loved ones), and collaborators including Nobel Laureates, nota- (those who develop solutions can join the ble academics of several scientific for someone outside their circle fields, patients and patient associ- of family/friends) of any disease platform ations of several diseases, from all and geography. around the world.
14 Celebrating 3 Years of Patient Innovation “ ...there was a need to create an online platform that made the diffusion of these solutions possible. And from this, Patient Innovation was born”
Celebrating 3 Years of Patient Innovation 15 16 Celebrating 3 Years of Patient Innovation 1 / Patient Innovation Platform The purpose of the Patient Innovation Platform
After registering, users have full access to all patient communities, where they may share any solu- tions they have developed with others, as well as browse solutions and strategies that other users have created and shared with the community.
Another feature that makes this platform unique is its medical screening. All of the solutions undergo a screening process that identi- fies and removes posts deemed offensive or inappropriate, for the purpose of commercial trade, that do not qualify as a proposal, that involve drugs, chemicals or biologics, that consist of invasive devices, or that are visibly and intrinsically dangerous. Many solutions are of a prac- tical nature and may not require scientific validation. However, this does not disregard their importance in facilitating the day-to-day lives of patients and caregivers.
Furthermore, the user commu- nity, which may include patients, health professionals, and other individuals, will provide feedback through comments and informal ratings to the proposed solutions.
Celebrating 3 Years of Patient Innovation 17 How it works
HWe have envisioned a platform that allows anyone to explore the world of patients, caregivers and collaborators that create solutions to overcome challenges presented by a health condition.
To start using the Patient Innovation platform, simply go to ↓ https://patient-innovation.com
Through this link, you will find information that will help you become part of this incred- ible community. Nevertheless, here is a sneak peek of what you can do.
18 Celebrating 3 Years of Patient Innovation 1 / Patient Innovation Platform How it works
1. see what's happening
All published solutions are grouped into categories, making every- thing related to the same topic easier to find. You can explore shared solutions through our six categories (↓) or through keywords.
CONDITION SYMPTOM
Solutions sorted by condition. Solutions sorted by symptom. Ex.: What solutions were Ex.: Are you looking for solutions developed for individuals for unbearable headaches? with paraplegia?
LOCATION ACTIVITIES
Solutions related to a specific part Solutions sorted by activities. of the human body. Ex.: Are you looking for solutions Ex.: Do you have some trick to to overcome some obstacles reduce hand tremor? inherent to a specific activity (walking, eating, showering...) ?
DEVICES THERAPY
All the devices sorted by type Solutions to overcome some prob- (wheelchairs, apps, 3D printed lems during therapy. devices, etc.) Ex.: The backpack developed by an 11-year-old girl, Kylie Simonds, to help her during chemotherapy.
Celebrating 3 Years of Patient Innovation 19 2. discover the latest solutions Get inspired! Look for the latest solutions and discover what patients and caregivers have been doing
20 Celebrating 3 Years of Patient Innovation 1 / Patient Innovation Platform How it works
3. post your own solution Post the solution you have de- veloped. Don’t worry if it seems simple; as long as it has helped you overcome an issue, it is considered a solution. People who suffer from the same problem will be grateful!
4. be social Comment and help others im- prove their solutions by giving your feedback! Share your own solution or the solutions of others on Facebook, Twitter or YouTube!
5. manage favorites
Once you register, you can book- mark the groups of diseases that interest you the most. You can also set up notifications to receive updates from your favorite groups.
Celebrating 3 Years of Patient Innovation 21 1 / Patient Innovation Platform Launch Event
Launch Event
Our platform and research 02 initiative was publicly presen- ted at the Patient Innovation Launch Event, held at CATÓLICA-LISBON in Portugal, on February 7th 2014
his event brought together Hippel, Sir Richard Roberts and Tpatient innovators, scholars, Harry DeMonaco gave remarkable and supporters of our internation- talks. An incredible day where al, non-profit Patient Innovation patients, caregivers and collabora- platform. tors were celebrated as innovators and the motivation behind their We had the pleasure of fea- creations were highlighted. turing a group of patients, care- Participants from several diffe- givers and collaborators who rent fields came together to discuss shared their own obstacles and the status quo of technology in amazing solutions, such as Tal healthcare and the importance of Golesworthy (“the man who fixed empowering people to create and his aorta”), Ana Luísa Vaz (“the share their own solutions. 03 type 1 diabetes girl who, against all odds, runs marathons”), Ivan Owen (“the artist who prints fin- gers and hands in a 3D printer”). 02 KEYNOTE SPEAKERS 03 DIOGO LOPES Along with them, some impor- Some of the launch event's keynote speakers, A young pianist who suffers from Charcot tant members of the scientific from left to right: Francisco Veloso, Glória Marie Tooth disease, who had the idea Garcia, Salvador Mendes de Almeida, Tal Go- for the development of thermal pockets, community, such as Prof. Eric von lesworthy, Ana Luísa Vaz, Louis Plante, Diogo which were created by students Lopes and Joaquina Teixeira. from JUNITEC.
22 Celebrating 3 Years of Patient Innovation 04
04 SIR RICHARD ROBERTS 1993 Nobel Prize Laureate in Physiology or Medicine, and Patient Innovation Ad- visory Board member.
Celebrating 3 Years of Patient Innovation 23 1 / Patient Innovation Platform Platform evolution
Platform evolution
atient Innovation has made The team is always working Psome significant changes to improve the designs of other to its platform since its launch in In January 2016, features. Updates usually come 2014. Patient Innovation out slowly and at a small scale, What started as an academic achieved another with the community getting the repository of medical innovations first taste of new features before developed by patients, caregivers, milestone with 600 they go live. and collaborators, has grown into live solutions In January 2016, Patient In- a multilingual platform that en- novation achieved another mile- courages people from all around developed by stone: 600 live solutions devel- the world to post, share, discuss members of the oped by members of the commu- and evaluate solutions, tips and community, and nity, and curated by the Patient adaptations that make life more Innovation medical team. With the comfortable and happier for the curated by the help of our community, the Patient community. Patient Innovation Patient Innovation Innovation database is growing has become a centralized place every day. for posting and sharing innova- medical team tive solutions that help improve people’s lives. Besides offering the Patient Innovation homepage in English and Portuguese, Patient Innova- tion recently unveiled the entire website also in German. 100 SOLUTIONS IN JULY 2014 200 SOLUTIONS IN FEBRUARY 2015
FEBRUARY, 2014
PATIENT INNOVATION PLATFORM VERSION 2.0 RELEASED IN NOVEMBER 2014
PATIENT INNOVATION PLATFORM LAUNCHED IN FEBRUARY 2014 FREQUENCER, A SOLUTION BY LOUIS PLANTE FOR CYSTIC FIBROSIS, WAS SHARED ON NOVEMBER 16th 2014.
24 Celebrating 3 Years of Patient Innovation 1 / Patient Innovation Platform Platform Evolution
What started as an academic repository of medical innovations 3rd PATIENT INNOVATION developed by patients, caregivers and AWARDS, th collaborators has grown into a NOVEMBER 28 2017 multilingual platform that encourages people from all around the world to post, share, discuss and evaluate solutions, tips and adaptations that make life more com- fortable and happier for the community
750 SOLUTIONS IN JULY750 2017 TAL GOLESWORTHY'S SOLUTION EXOVASC® FOR MARFAN SYNDROME HAS BEEN PATIENT IMPLANTED SUCCESSFULLY IN INNOVATION MORE THAN 100 PATIENTS PLATFORM VERSION 3.0 RELEASED IN NOVEMBER 2016
600 SOLUTIONS IN APRIL 2016 300 SOLUTIONS IN JUNE 2015
500 SOLUTIONS IN DECEMBER 2015
FLATWARE FOR DISABLED PEOPLE WAS ONE OF THE FIRST SOLUTIONS OF 2016, SHARED IN PATENT INNOVATION PLATFORM ON JANUARY 11th 2016
Share your solutions now at +100 patient-innovation.com solutions related to 3D printing technology
Celebrating 3 Years of Patient Innovation 25 26 Celebrating 3 Years of Patient Innovation Patient Innovation2 Awards
“ I firmly believe it is an initiative at the cutting edge of research and innovation, and a project with the potential to improve the lives of many around the world”
— Francisco Veloso PROFESSOR, FORMER DEAN OF CATÓLICA-LISBON SCHOOL OF BUSINESS & ECONOMICS DEAN OF IMPERIAL COLLEGE BUSINESS SCHOOL PATIENT INNOVATION SUPPORTER
Celebrating 3 Years of Patient Innovation 27 2 / Patient Innovation Awards The 1st Patient Innovation Awards The 1st Patient Innovation Awards
28 Celebrating 3 Years of Patient Innovation 2 / Patient Innovation Awards The 1st Patient Innovation Awards
Patient Innovation The Patient Innovation Awards This list was elaborated based is all about em- honor innovators in three separate on the novelty, potential and im- categories according to their solu- pact of the solution in helping powering patients, tions’ novelty and relation with others with the same condition to caregivers, and need: manage their care process. Two additional criteria were collaborators, by taken into account regarding the highlighting their • PATIENT INNOVATION AWARD innovator: the recognition as an Innovation developed by a inspirational role model to society, valuable knowledge patient, improving his/her own and the commitment devoted to and experience health condition; diffuse the solution, thus empow- ering others. The final decision was • CAREGIVER INNOVATION AWARD made by the Advisory Board who, e want to keep motivat- Innovation developed by a care- when faced with outstanding solu- Wing our community to be giver, to help improve the health tions, could not restrict themselves creative and innovative, and to condition of a loved one; to one winner per category and share their solutions with each awarded a total of six winners, other. That is why we have creat- • COLLABORATOR INNOVATION which were announced on Feb- ed the Patient Innovation Awards, AWARD ruary 6th 2015 and the ceremony where the Patient Innovation team Innovation developed by a collab- took place on July 13th 2015. celebrates the achievement and orator to help improve the health contribution of patients, caregiv- condition of someone outside their ers and collaborator innovators, circle of family or friends. each year. These awards provide the op- portunity to recognize any patient, The Patient Innovation team caregiver or collaborator who has undertook an initial screening of developed a solution that helps more than 200 innovations that cope with a health condition or were considered eligible, and then disease, and posted it on the Pa- made a short list of ten innova- tient Innovation platform. tions per category.
Sponsors:
Celebrating 3 Years of Patient Innovation 29 2 / Patient Innovation Awards The 1st Patient Innovation Awards
The winners list, based on the criteria described before, resulted as follows:
Louis Plante (Canada) Lisa Crites (USA) THE FREQUENCER™ THE SHOWER SHIRT™
Louis Plante* suffers from Cystic Fibrosis, which Lisa Crites was diagnosed with breast cancer. After leads to an increase in the risk of pulmonary in- having a mastectomy, she was told not to wet the fection, resulting from changes in secretion of mu- suture area in order to avoid infection in the drains cus-producing glands. Louis would previously spend of insertion sites. This made showering difficult. four hours a day in kinesiotherapy (alternate beats That was when Lisa created a water proof shirt, in the chest and back) to reduce the problem, until The Shower Shirt™, helping other patients suffering one day, during a concert, Louis noticed that the from the same problem to shower normally, living vibration produced by the speakers had a positive with this condition with dignity. The Shower Shirt™ effect. Based on his experience in electronics, Louis has already been approved by the FDA, and is now developed the Frequencer™, a device that produces available in 36 countries. sound waves, which helps to clean the lungs, by creating low energy resonant vibrations (acoustics), IN CATEGORY: PATIENT reducing mucus viscosity and allowing an increased muscus flow in patients with Cystic Fibrosis.
* Louis Plante has passed away on April 8th 2017, but his legacy will live on all patients with Cystic Fibrosis that he helped. Louis will be always remembered.
IN CATEGORY: PATIENT
30 Celebrating 3 Years of Patient Innovation Tal Golesworthy (UK) Debby Elnatan (Israel) THE EXOVASC® THE UPSEE™
Tal Golesworthy, suffering from Marfan Syndrome, Debby’s youngest son was born with cerebral pal- needed cardiac surgery and would be treated with sy. Despite not being able to move or participate in anticoagulants for the rest of his life. He used his family walks, Debby didn’t give up. She tried several professional experience in engineering and his ways to “connect” her son to herself, which led to plumbing knowledge to design, with the help of Upsee™. With the Upsee™, her son is able to “walk” his doctors, an external support for the aorta root like any other child, and can now participate in the - Personalized External Aortic Root Support. Since family activities. Upsee™ helps children with similar this support was put in his heart, in 2004, the same conditions to “walk” and participate in social events. technique has been used in more than 100 patients to prevent rupture of the aorta. IN CATEGORY: CAREGIVER
IN CATEGORY: PATIENT
Joaquina Teixeira (Portugal) Ivan Owen (USA) HELIUM BALLONS 3D PRINTED HAND
Joaquina’s son, Gonçalo, suffers from Angelman Ivan Owen, an artist who makes entertainment Syndrome, a disease characterized by developmental products, posted a video on Youtube featuring a delay, inability to speak, convulsions and psychomo- “mechanical hand”. A Southern African carpenter, tor problems. Despite being six and able to walk, her who lost some of his fingers while working in his son refused to stand up. One day, at a party, Joaquina shop, contacted him and asked if Ivan could help noticed that the helium ballons on the ceiling were him design and make a low cost prosthetic hand. getting the boy’s attention, making him try to grab Ivan accepted the challenge and started making low them and, by doing so, he was standing up. On that cost prosthetic hands also for children. Later on, he very day, Joaquina put helium balloons all over her shared his digital files to make these hands in 3D house and watched her son jump and walk, trying printers. His work has inspired a large and growing to grab the balloons. number of volunteers and creators that are now trying to make a difference (e.g. e-NABLE). IN CATEGORY: CAREGIVER IN CATEGORY: COLLABORATOR
Celebrating 3 Years of Patient Innovation 31 2 / Patient Innovation Awards The 1st Patient Innovation Awards
05 “Embrace open innovation of all kinds” › Carlos Moedas EUROPEAN COMMISSIONER FOR RESEARCH, SCIENCE AND INNOVATION
he six award winners had Ttime on stage to explain their own story, highlighting the need and the motivation behind their solution to a full auditorium. The event received great feed- back from the audience, keynote speakers and winners, as well as a strong presence in the media. Carlos Moedas, European Com- missioner for Research, Science and Innovation, Prof. Eric von Hippel from MIT and the six award win- ners, from Canada, the USA, Israel, United Kingdom and Portugal we- re the keynote speakers. The Pa- tient Innovation Awards received the High Patronage of His Excel- lency The President of the Portu- guese Republic. The Commissioner congratulat- ed the Patient Innovation project for inspiring Europe to “embrace open innovation of all kinds”. In his speech, he had kind words for the finalists remembering the importance of their innovations for society. Prof. Eric von Hippel, represent- ing the Patient Innovation Advisory Board, gave an incredible and inspiring talk about how to better understand the power of citizen innovation and the consequential effects of adopting and diffusing user-driven solutions.
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32 Celebrating 3 Years of Patient Innovation 2 / Patient Innovation Awards The 1st Patient Innovation Awards
07 08
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05 AWARD CEREMONY 08 THE AWARDS The 1st Patient Innovation Awards cere- The Patient Innovation Awards. mony at Fundação Calouste Gulbenkian, Lisbon, on July 13th 2015. 09 FAMILY PORTRAIT Patient Innovation Awards ceremony group portrait. 06 OPENING Pedro Oliveira, Patient Innovation project founder and leader, opening the awards ceremony.
07 PROF. ERIC VON HIPPEL AND CARLOS MOEDAS Prof. Eric von Hippel, Patient Innovation Advisory Board member and Carlos Moedas, European Commission- er for Research, Science and Innovation.
Celebrating 3 Years of Patient Innovation 33 The 2nd Patient Innovation Awards
34 Celebrating 3 Years of Patient Innovation 2 / Patient Innovation Awards The 2nd Patient Innovation Awards
The 2nd Patient Innova- tion Awards ceremony took place on Novem- ber 10th 2016 during the Web Summit in the Meo Arena, Lisbon
he success of the 1st Patient The Web Summit is Europe’s TInnovation Awards encour- largest and most important tech- aged the Patient Innovation team nology market place with 53 000 to go for the second edition of the attendees from 150 countries. ceremony. The deadline to submit After meeting with the Advisory an innovative solution for the 2nd Board on January 28th 2016, the edition was January 15th 2016. Patient Innovation team selected These new winners were pu- seven innovators as the winners of blicly announced in April 2016 and the 2nd Patient Innovation Awards. a new category was added: Serial Patient Innovator, for a patient who develops several solutions. The 2nd Patient Innovation Awards ceremony took place on November 10th 2016 during the Web Summit in the Meo Arena, Lisbon.
Sponsors
Celebrating 3 Years of Patient Innovation 35 The 2nd Patient Innovation Awards @ Web Summit
36 Celebrating 3 Years of Patient Innovation Celebrating 3 Years of Patient Innovation 37 2 / Patient Innovation Awards The 2nd Patient Innovation Awards @ Web Summit 10
The 2nd Patient Innovation Awards Ceremony was held at the HealthConf, on November 10th 2016
he Web Summit brought Ta lot of people to Lisbon, from November 7th to November 10th 2016. About 53 000 attend- ees came to our city to partici- pate in this large scale event, which had speakers including António Costa, the Portuguese Prime Minister, Mike Schroepfer, Facebook's CTO, Werner Vogels, Pedro Oliveira held a brief Since Giesbert Nijhuis from the Amazon.com's CTO, Joseph Gor- presentation about the Patient Netherlands, couldn’t be present, don-Levitt, Actor and HitRECord Innovation Project, and then it was Govert Jan Bijl de Vroe, the Dutch Founder, among many others. time to honor our laureates! Ambassator in Portugal, received The Web Summit was divid- Professor Manuel Heitor, Por- the award on his behalf. ed into three pavillions and one tuguese Minister of Science, Tech- After the ceremony, there was center stage, having a total of 21 nology and Higher Education, de- a panel moderated by Francisco different conferences according to livered the awards and diplomas Veloso, Dean of CATÓLICA-LISBON different themes. The 2nd Patient to each laureate, and also gave a School of Business & Economics, Innovation Awards Ceremony was speech about the project and the about the importance of patients held at the HealthConf on Novem- importance of having people who and caregivers in innovating and ber 10th 2016. The room was full, as innovate to overcome their own how to integrate these innova- hundreds of people came to attend daily challenges. tions into the healthcare system. the ceremony. Michael Seres talked about his experience as a patient, inventor and entrepreneur, and Joyce Lee explained the benefits of using de- sign to improve the quality of life.
10 PRESENTATION Pedro Oliveira started the ceremony with a brief presentation.
11 AWARDS CEREMONY Professor Manuel Heitor, Portuguese Min- ister of Science, Technology and Higher Education, delivers the awards and di- plomas to each laureate. 11
38 Celebrating 3 Years of Patient Innovation 2016 LISBON WEB SUMMIT 12 QUICK FACTS 4 DAYS 21 CONFERENCES 53 000 ATTENDEES
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12 AWARDS CEREMONY 13 DEBATE Professor Manuel Heitor holds a speech Moderated by Francisco Veloso, the debate after delivering the 2nd Patient Innovation was about the integration of patients in- Awards. novations into healthcare system.
Celebrating 3 Years of Patient Innovation 39 2 / Patient Innovation Awards The 2nd Patient Innovation Awards @ Web Summit
Giesbert Nijhuis (Netherlands) LAESIECUSHION • HOW TO TAKE PHOTOS WITHOUT USING HANDS • BED COMPUTER
...And the Patient Giesbert had an accident that left him paralyzed from the neck down. He created his own website, LaesieWorks, where he shares ideas and solutions Innovation he developed so that he can live better with his condition. He will be awarded for all three of the following solutions: LaeasieCushions, cushions to Award goes to... prevent pressure wounds for wheelchair users, hands free photo, a method for people who can’t use their hands to take photos more independently, and the bed computer, an adaptation Giesbert made so he can work on his computer while lying down in bed.
IN CATEGORY: SERIAL PATIENT INNOVATOR
Michael Seres (UK) OSTOM-I™
Michael Seres was diagnosed with Crohn’s disease when he was 12 years old. After over 20 operations David Day (UK) and intestinal failure, he underwent a small bowel COMPUTER GAMES TO HELP WITH CYSTIC FIBROSIS transplant at Churchill Hospital, Oxford, England, and started to use an ostomy bag. His own experience as an ostomy patient led him to design the initial Ostom-i David Day, Alicia's father, developed these games Alert prototype whilst recovering from transplant. with his colleagues to ease his daughter's suffering Ostom-i Alert allows patients to know when their during Cystic Fibrosis treatments, while she did ostomy bags are full so they can empty them with- respiratory exercises. The games are played using a out risking overflow. Ostom-i Alert addresses a very device which connects breathing tubes to the com- relevant need for patients who undergo intestinal puter. Through this, children can control characters procedures that require them to wear colostomy and shapes on the screen by exhaling at a certain bags, often for the rest of their lives. pressure.
IN CATEGORY: PATIENT IN CATEGORY: CAREGIVER
40 Celebrating 3 Years of Patient Innovation Doron Somer (Israel) Pavel Kurbatsky (Russia) ANGELSENSE WALKING TALKING STICK
Doron Somer created AngelSense, in 2013, a GPS Pavel Kurbatsky was passionate about technology and voice monitoring technological solution designed and electronics since he was a young boy. Inspired by for children with special needs such as Autism and blind people he met during time spent volunteering, Aspergers, such as the case of his son. After his he created a special walking stick and talking dark 17-year-old autistic son suffered another mistreat- glasses. The stick has sensors at three levels: head, ment at the hands of a caregiver, Doron Somer sought waist and feet, which scan the surroundings, and as to find a solution to help monitor Itamar’s safety and soon as the user is about to approach an obstacle, well-being. AngelSense has advanced data analytics he/she is alerted through a voice message, seeing as optimized for personal tracking, adaptive remote there are ear phones fitted into the glasses, so that device control algorithms and its design meets the they can avoid the obstacle. A GPS system is also specific requirements of children with special needs fitted, which allows it to gather information about and their families. a particular location for future reference.
IN CATEGORY: CAREGIVER IN CATEGORY: COLLABORATOR
Kenneth Shinozuka (USA) Duncan Fitzsimons (UK) SAFEWANDER™ MORPH™ WHEELS
Kenneth’s grandfather suffers from Alzheimer’s Duncan invented fodable wheels when he was disease. He often wanders alone at night. Since a very a graduate student at the Royal College of Arts young age, Shinozuka has designed smart devices for in London, for his bicycle. He then started getting his grandfather. Kenneth came up with a way to keep emails from the wheelchair community telling him him safe - and help his aunt who looks after him: a that this concept would be invaluable to wheelchair device that is attached to clothing, designed to send users, so he redesigned it as a wheelchair wheel. The an alert to a caregiver if a patient gets out of bed, and MorphWheels™ allows users to fold their wheelchair is connected to a smartphone app - SafeWander™. up into a much smaller, neater package, so it can fit into the overhead locker of an airplane, or the IN CATEGORY: CAREGIVER trunk of a car. IN CATEGORY: COLLABORATOR
Celebrating 3 Years of Patient Innovation 41 2 / Patient Innovation Awards The Patient Innovation Awards Forum
The Patient Innovation Awards Forum
14 PATIENT INNOVATION AWARDS FORUM The Patient Innovation Awards Forum, hosted at CATÓLICA-LISBON School of Business & Economics, on November 9th 2016
42 Celebrating 3 Years of Patient Innovation 2 / Patient Innovation Awards The Patient Innovation Awards Forum
The Patient Innovation (PI) team hosted the Patient Innovation Awards Forum at CATÓLICA-LISBON School of Business & Economics, on November 9th 2016
This was a pre Web Summit We were also very humbled event open to the entire commu- and honored to have the presence nity, with several distinguished of Tzipora Rimon, the Israeli Am- guests, as well as the 2nd PI Awards bassator in Portugal, as well as laureates. This way, our laureates representatives from the UK and had the chance to meet the Pa- Russian Embassies in Portugal. tient Innovation community and to introduce themselves as well as their innovations. The Patient Innovation Awards Forum panel was composed of Francisco Veloso, former Dean of CATÓLICA-LISBON School of Business & Economics, who did the 15 opening remarks, Pedro Oliveira and Helena Canhão, Patient Inno- TZIPORA RIMON vation Project Leaders, and Joyce Tzipora Rimon, the Israeli Ambassator in Portugal was the Israeli representative Lee, MD, professor of University of at the Patient Innovation Awards Forum. Michigan and expert on Design Thinking in HealthCare.
PATIENT INNOVATION AWARDS FORUM KEYNOTE SPEAKERS 16 Doron Somer, David Day, Joyce Lee (doctor and professor), Kenneth Shinozuka, Michael Seres and Pavel Kurbatsky (from left to right) brought their innovations and showed them, explaining what drove them to develop their new product.
Celebrating 3 Years of Patient Innovation 43 44 Celebrating 3 Years of Patient Innovation Giving a3 hand
“ This platform has enormous potential to improve the lives of rare diseases sufferers. Patients and caregivers are innovators in their own right.”
— Katherine J. Strandburg PROFESSOR, NEW YORK UNIVERSITY SCHOOL OF LAW PATIENT INNOVATION ADVISORY MEMBER
Celebrating 3 Years of Patient Innovation 45 3 / Giving a hand
Giving a hand
17
ne of the goals of Patient OInnovation is to help pa- tients, caregivers and collaborators develop and implement their own solutions. On July 13th 2015, the Patient Innovation team, with the help of Ivan Owen, gave a 3D print- ed hand and arm to a 7-year-old Portuguese boy, Nuno. Nuno, who is also our youngest fellow on the team, also contribut- ed by sewing some pieces of his new red and white gadget.
17 IVAN, NUNO AND SALOMÉ Ivan Owen, artist and 3D printing expert from ENABLE, Nuno, the Portuguese 7-year-old boy who received a 3D printed hand and arm, and Salomé Azevedo, from Patient Innovation team.
18 NUNO Nuno trying out his new gadget. 18
46 Celebrating 3 Years of Patient Innovation Celebrating 3 Years of Patient Innovation 47 48 Celebrating 3 Years of Patient Innovation 4Activities
“ The Patient Innovation platform is a project with potentially great social value.”
— Eric von Hippel PROFESSOR, MIT SLOAN SCHOOL OF MANAGEMENT PATIENT INNOVATION ADVISORY MEMBER
Celebrating 3 Years of Patient Innovation 49 4 / Activities Health Innovation Challenge Health Innovation Challenge
The Health Acceleration Chal- Even though Patient Innovation lenge was a “scale up” competi- did not win (others were consid- tion that focused on compelling, ered to have a higher impact on already-implemented health care the US health care system), we solutions and helping them to were very happy with the overall grow and increase their impact outcome and felt inspired by the through powerful networking and overwhelming support given by funding opportunities. our followers. Patient Innovation participated in the Harvard Health Innovation Challenge on November 15th 2014. The project was selected as one of Patient Innovation was the the 18 semi-finalists from 478 ap- plications (from institutions such only non-US project among as Stanford University, Cleveland Clinic, Mayo Clinic, Kaiser Perma- all the semi-finalists. nente, MD Anderson, Intermoun- tain, Massachusetts General Hos- Patient Innovation was the pital, and many more). Patient Innovation was the only most viewed (over 25 600 non-US project among all semi-fi- nalists. Patient Innovation was visualizations), most applaud- also the most viewed (over 25 600 visualizations), most applauded ed and most commented and most commented on project in the competition. on project in the competition
+25 600 364 126 VIEWS APPLAUSES COMMENTS
50 Celebrating 3 Years of Patient Innovation 4 / Activities Patient Innovation recognized at summit with UN Secretary-General Ban Ki-moon
Patient Innovation recognized at summit with UN Secretary-General Ban Ki-moon
atient Innovation was fea- Ptured on the United Nations (UN) on November 30th 2016 in New York at the "Summit on Sci- ence and Technology Enablement for the Sustainable Development Goals”, as an example of "Commit- ments to Collective Action”. We were one of the five pro- jects selected as a case already contributing to two of the UN’s sus- tainable development goals: Good health and Well-Being & Industry, Innovation and Infrastructure.
20 PEDRO OLIVEIRA AND ELLIS RUBINSTEIN Pedro Oliveira and Ellis Rubinstein, pres- ident and CEO of the New York Academy of Sciences.
20
19 BAN KI-MOON Former Secretary-General of the United Nations.
Celebrating 3 Years of Patient Innovation 51 arthritis
medical : a disease that causes the joints of the body to become swollen and painful
52 Celebrating 3 Years of Patient Innovation 4 / Activities World Arthristis Day
21 HELENA, ELSA AND ANA Helena Canhão, MD, Patient Innovation project leader, Elsa Frazão Mateus and Ana Ribeiro, from Portuguese League Against Rheumatic Diseases (PLARD).
and arm from PI and Ivan Owen, also contributed with a video. After receiving several can- didates, the PI team and PLARD World selected two winners: Louis Plan- te, from Canada, and Carina An- tunes, from Portugal. They each got an Amazon Gift Card as their prize. The winners were selected Arthritis Day by the number of votes (likes on Facebook, the Patient Innovation platform and also on Twitter), and Patient Innovation has been The contest’s purpose was to all of the solutions were evaluated developing some interesting ac- stimulate platform members (as by the Patient Innovation team tivities with its partners Portu- well as gain new ones) to iden- and PLARD. guese League Against Rheumatic tify and share innovative solu- Patient Innovation also partici- Diseases (PLARD) tions, developed by patients and pated in the XVIII "Fórum de Apoio caregivers, who suffer from any ao Doente Reumático", an event kind of rheumatic disease, and by hosted by our partners PLARD in The first activity was the Patient doing so, help them to improve Lisbon on October 30th and 31st Innovation Challenge Day. This their lives. Lisa Crites and Joaquina 2015, where the Patient Innova- was a contest developed by PI and Teixeira, PI Award winners, made tion team interacted with patients PLARD, launched on September a video to help promote the chal- and Pedro Oliveira introduced the 12th 2015, to celebrate World Ar- lenge; Nuno, the 7-year-old little Patient Innovation project. thritis Day on October 12th. boy who got a 3D printed hand
Celebrating 3 Years of Patient Innovation 53 4 / Activities SOS Refugees by Patient Innovation SOS Refugees by Patient Innovation
In October 2015, Patient Innovation went to Macedonia to help refugees. SOS Refugees by Patient Innovation was an initiative that took Pedro Oliveira and Leid Zejnilovic to Tabanovce, on the border between Macedonia and Serbia, from the Greek border, where they bought hot meals, clothing and shoes for the refugees
atient Innovation created blind refugee (who was traveling Pa crowdfunding campaign, with her 67-year-old son) to reach via PPL, a portuguese crowdfund- the Serbian border. 6 823€ ing platform, with the purpose of All the collected funds reverted RAISED FROM THE PATIENT raising 3 000€ to buy provisions directly to the refugees - travel, INNOVATION CROWDFUNDING in Tabanovce. By the end of the accommodation, and the crowd- campaign - October 27th - 6 823€ funding campaign were covered were raised. by the promoters of this initiative. Thanks to the generosity of the campaign supporters, the SOS 22 refugees initiative was able to of- fer food, beverages, winter clothes and shoes, including: 2 400 hot soup meals (that were served at the arrival of four different trains), 6 000 juices, 3 000 pieces of chick- en pâté, 3 000 pieces of bread, 2 000 croissants, about 1 500 ba- nanas, 125 pairs of shoes (mostly to children and young adults), about 1 200 pairs of socks, about 150 gloves, 150 scarves and 150 winter hats. In addition to the distribution of the goods, among other achievements, Patient In- novation helped a 105-year-old
54 Celebrating 3 Years of Patient Innovation 23
In addition to the distribution of the goods, among other achieve- ments, Patient In- novation helped a 105-year-old blind refugee to reach the Serbian border
22 FOOD AND CLOTHES Food and clothing bought by the SOS Refugees iniciative.
23 SOS REFUGEES CAMPAIGN LOGO SOS Refugees gathered 6 823€ via crowdfunding.
24 SOS REFUGEES STATION 2 400 hot soup meals (that were served at the arrival of four different trains), 6 000 juices, 3 000 pieces of chicken pâté, 3 000 pieces of bread, 2 000 crois- sants, and about 1 500 bananas. 24
Celebrating 3 Years of Patient Innovation 55 4 / Activities Celebrating our 2nd year anniversary
atient Innovation was one Pof 11 innovations, from all over the world, distinguished by the office of the Prime Minister of the United Arab Emirates (UAE) Celebrating that was featured at the 4th World Government Summit in Dubai on February 8th – 10th 2016. nd
The World Government Summit our 2 year is a global event that promotes the exchange of knowledge in areas such as: government, tech- nology and innovation. The event brought togeth- anniversary er more than 4 000 world lead- ers, from over 90 countries. The speakers at the event included the former President of the United States, Barack Obama, the Presi- dent of the World Bank Group, Jim Yong Kim, the Secretary-General of the OECD, José Ángel Gurría, the Prime Minister of Egypt, Sher- if Ismail, the former President of Ireland, Mary Robinson, the former President of Mexico, Felipe Cal- deron, the former Prime Minister of France, Dominique De Ville- pin, among many other reputable individuals.
Patient Innovation was one of 11 innovations, from all over the world, distinguished by the office of the Prime Minister of the United Arab Emirates (UAE) 25
56 Celebrating 3 Years of Patient Innovation 26
Patient innovation had a very • The Frequencer™, (Low fre- 25 ENTRANCE WGS 2016 prominent presence at the Summit, quency generator for bronchial World Government Summit in Dubai th where a number of solutions were drainage), by Louis Plante (patient on February 8 2016. on display during the event: from Canada); 26 PATIENT INNOVATION STAND • 3D printed hand, (low cost • Feelipa, (a code system de- Some of the innovations from Patient 3D printing prosthetic hand and veloped so that blind and visually Innovation at the World Governement Summit - Feelipa, Billow Pillow, Upsee. arm), a collaboration between Ivan impaired people can see colors), Owen (USA) and the Patient Inno- by Filipa Nogueira Pires (caregiver vation team; from Portugal);
• The Upsee™ (mobility device • Billow Pillow, (a pillow to help for children with motor impair- patients who had mastectomies ment to allow the user to stand sleep and rest better), by Marnie and walk), by Debby Elnatan (care- Rustemeyer (patient from USA) giver from Israel); who also attended the event;
• The Shower Shirt™, (post-sur- • Removable thermal pockets, gical, water-resistant garment (portable pockets that heat its designed to prevent post-surgical user’s hands), by students from mastectomy drain sites, dialysis JUNITEC (Portugal); catheters and medical-ports from coming into contact with water • Exovasc®, (aortic support de- while showering), by Lisa Crites vice for patients who suffer from (patient from USA) who also at- Marfan’s Syndrome), by Tal Goles- tended the event; worthy (patient from UK).
Celebrating 3 Years of Patient Innovation 57 4 / Activities Non-Profit Startup of The Year 2016
PATIENT INNOVATION WINS "Non-Profit Startup of The Year 2016" in London
Patient Innovation
Patient Innovation won The HealthCare Startup Awards 2016 and was named Non-Profit Startup of The Year
he ceremony, promoted Tby HealthCare Society in London, was held on December 17th 2016. Over 1000 startups were considered and 50 were shortlisted Non-Profit Startup as finalists. of The Year 2016 58 Celebrating 3 Years of Patient Innovation 4 / Activities AACSB distinguised Patient Innovation as Entrepreneurship Spotlight Challenge Honoree (2017)
AACSB distinguised 27 AACSB ENTREPRENEURSHIP Patient Innovation SPOTLIGHT CHALLENGE 2017 AWARD as Entrepreneurship 27 Spotlight Challenge Honoree (2017)
CATÓLICA-LISBON was one The Entrepreneurship Spot- of four European business schools light Challenge recognized 20 recognized by AACSB as Entre- schools worldwide for their en- preneurship Spotlight Challenge trepreneurship programs and this Honoree specifically for the work recognition demonstrates CATÓLI- of Patient Innovation! AACSB is the CA-LISBON leadership in creating world’s largest business education and incubating cutting-edge inno- alliance and includes 1,500 mem- vative projects. ber organizations and more than 785 accredited business schools worldwide.
Celebrating 3 Years of Patient Innovation 59 60 Celebrating 3 Years of Patient Innovation Beyond the Lab5 exhibition
“ You have been hitting the target pretty well. It’s been an awesome time. I have been following you, and it’s amazing all the knowledge you were able to brought together. This project is very close to my heart, and to see you guys working so hard… It just amazes me. Thank you.”
— Louis Plante CREATOR OF THE FREQUENCERTM 1st PATIENT INNOVATION AWARD WINNER
Celebrating 3 Years of Patient Innovation 61 5 / Beyond the Lab exhibition
Beyond the Lab exhibition
The exhibition will be moving around 29 european countries. Its opening was on July 6th 2016, in Bonn, and on July 7th 2016 at the Science Museum in London
PATIENT INNOVATION – “THE PATIENTS TURNED MEDICAL INNOVATORS” AT THE SCIENCE MUSEUM
Patient Innovation was invited • The Shower Shirt™, a shirt that • Removable thermal pockets, by the Science Museum of Lon- allows patients to protect surgical portable pockets that heat its us- don to participate in an exhibition drains from water while showering, er’s hands, created by students called "Beyond the Lab: The DIY invented by Lisa Crites (one of the from JUNITEC, from Instituto Su- Science Revolution". 1st PI Awards winners); perior Técnico, Portugal;
This is exhibition explores the • 3D printing hand and arm, • ViEx, a wooden device to help increasing number of inventions low cost 3D printing prosthetic exercise both hands using strings, and scientific discoveries that are hand and arm, a collaboration invented by Sarah Betts from USA. being made by hackers, patient of Ivan Owen (one of the 1st PI groups and ordinary citizens – Awards winners) with the Patient rather than by professional scien- Innovation team; tists and researchers. • Upsee™, mobility device for The Patient Innovation team children with motor impairment to selected seven innovations, that allow the user to stand and walk, are featured on the Patient Inno- developed by Debby Elnatan (one vation platform, to be displayed of the 1st PI Awards winners); at the exhibition: • Ostom-i alert, a sensor that • ExoVasc®, an aortic support alerts ostomized patients on how created by Tal Golesworthy (one full their ostomy bags are, devel- of the 1st PI Awards winners); oped by Michael Seres (one of the 2nd PI Awards winners);
62 Celebrating 3 Years of Patient Innovation Celebrating 3 Years of Patient Innovation 63 The exhibition opening was on July 6th in Bonn, and on July 7th 2016 at the Science Museum in London, and it will be moving around 29 European countries
64 Celebrating 3 Years of Patient Innovation Celebrating 3 Years of Patient Innovation 65 66 Celebrating 3 Years of Patient Innovation Patient Innovation6 Research
“ Doctors make the worst patients. Maybe in the future patients will make the best doctors”
— Carlos Moedas EUROPEAN COMISSIONER FOR RESEARCH, SCIENCE AND INNOVATION IN 1st PATIENT INNOVATION AWARDS CEREMONY, LISBON, 2015
Celebrating 3 Years of Patient Innovation 67 6 / Patient Innovation Research Research and Outreach
Research and Outreach
e started as a research We were lucky to have seven Also, within the Wproject and, ever since, wonderful students from Cátol- Carnegie Mellon research is at the core of our ex- ica-Lisbon School of Business & istence. We are privileged to ex- Economics do their Master thesis Portugal program, perience wonderful collaborations on the topics of Patient Innovation. our colleague, Leid with many patients and patients’ Matilde Czernin, Tomás Fidelis, Rita associations worldwide. Oliveira, Viktoria Shcherbatiuk, Zejnilovic, com- In our work, we focus on ap- Joana Roldão, Jan-Philipp Dreier pleted his doctoral plied research, gathering evidence and João Pedro Silva, besides the thesis in 2014 with about innovation activity by pa- praise from their committees, they tients and caregivers. all obtained high grades for their Magna cum Laude, And it has been extremely pro- contributions. Moreover, within the and two thirds of ductive. Seven scientific journal Carnegie Mellon Portugal program, papers/book chapters and hun- our colleague, Leid Zejnilovic, the thesis focused dreds of conference presentations completed his doctoral thesis in Patient were all invaluable experiences 2014 with Magna cum Laude, and for us. We have learned a lot about two thirds of the thesis focused on Innovation patient innovation, and we have Patient Innovation. The degree is spread the Patient Innovation word jointly offered by Carnegie Mel- about our role models, ordinary lon University, CATÓLICA-LISBON people with extraordinary contri- School of Business & Economics bution to medical care. and Instituto Superior Técnico.
68 Celebrating 3 Years of Patient Innovation 5 / Patient Innovation Research Research and Outreach
“Our research shows that patients and their caregivers are able to create many different types of innovations. Some actually improve the patient’s health or alleviate symptoms; others make daily life easier.” Helena Canhão, Pedro Oliveira, Leid Zejnilovic
“We found that patients and caregivers have signicant innovative capabilities and have developed various solutions, treatments, and medical aid devices for themselves (e.g. about 50% of the solu- tions for cystic fibrosis were developed by the patients).” Helena Canhão, Pedro Oliveira, Leid Zejnilovic
“Given that hundreds of millions of people worldwide are afflicted by rare diseases, patient and their caregiv- ers can be a tremendous source of innovation for many who are similarly afflicted. Our findings suggest that many patients could be greatly assisted by improved diffusion of known solu- tions and best practices to and among patients and their caregivers.” Pedro Oliveira , Leid Zejnilovic, Helena Canhão, Eric von Hippel
Celebrating 3 Years of Patient Innovation 69 6 / Patient Innovation Research 64% What we learned so far What we learned so far
he most important thing Let us use this opportunity to Twe have learned so far is thank the association of people that there are many people who with rare and mental diseases, actively try to manage their prob- Raríssimas, specifically director, lems resulting from health disor- Paula Brito e Costa, for their pro- ders and develop solutions. We fessionalism and support for our are inspired by their stories of cre- project. ativity, strength in facing adversity, We are convinced that good their altruism, and positive energy times are ahead. Not only that that overcomes the challenges technology enables many individ- they face. uals to turn their ideas into reali- As we learn about patient in- ties, but also digital platforms are novation, we share our insights mushrooming, covering various in academic publications. So far, needs of those with an interest in we have written seven scientif- health care. We shared some of ic journal papers/book chapters our thoughts about the opportu- and we have several new projects nities that arise from this trend in underway. a book chapter in Boundaryless In a paper published in "Orpha- Hospital, "Rethink and Redefine net Journal of Rare Diseases" Health Care Management" (2016). (2015), we reported the results of an exploratory study of innovative activity among individuals afflict- ed with rare diseases. From 500 only 5% phone-surveyed individuals, 53% reported taking initiative to deal of the authors with novel solutions with a health related issue. About 8% of the interviewees had devel- have shared information about their oped solutions that introduced solution with medical professionals some level of novelty. Only 5% of the authors with novel solutions Novel solutions developed by have shared information about Also, we were honored by an patients and caregivers are some- their solution with medical pro- invitation to contribute with a times just a result of a serendipi- fessionals. These findings empha- chapter on Patient Innovation in tous insight. But, more often, the size the need to carefully design the book written by the commu- developers carry out research, col- public health policies that would nity of open and user innovation lect complementary skills, resourc- empower patients and caregivers scholars, entitled "Revolutionizing es, and complete many attempts to safely develop and share their Innovation: Users, Communities, of trial and error before a usable solutions. and Open Innovation" (2016). solution comes to light.
70 Celebrating 3 Years of Patient Innovation 6 / Patient Innovation Research What we learned so far
28%
THE VAST POTENTIAL OF PATIENT INNOVATION
New innovation for patient = 28% New innovation for the world = 8% Did not innovate = 64%
“Patient Innovation: When patients set to help themselves and end up helping many others”. The book features personal stories of the Patient Innovation platform users, the patients, caregivers, and col- laborators who created innovative solutions to cope with a health disorder. We are never indifferent Humbled by all the wonderful expe- riences of sharing the Patient Innova- tion stories, we de- cided also to share them in a book
when hearing or reading about Using this process these stories, and we hope that our model, we discuss readers will feel the same. the challenges and po- The book is planned to be re- tential to support the inno- leased for publication in 2018. vation process by patients, and In 2014, the Portuguese Society 8% how platforms - such as Patient for Rheumatology included ques- Innovation – can help making tions about patient innovation ac- better use of patient innovations. tivity in a national longitudinal We made a simple process mod- The book, “Governing Medical study of rheumatology and health el of patient innovation, to guide Research Commons”, is a part of among residents in Portugal. We our thoughts about future actions Cambridge Series on Governing asked questions about the devel- and shared it in a book chapter en- Knowledge Commons, and was opment, adoption, and the atti- titled “Challenges and opportu- printed in 2016. tudes towards patient innovation. nities in developing and sharing Humbled by all the wonderful We are excited to share our new solutions by patients and car- experiences of sharing the Patient discoveries from this research en- egivers, the story of a knowledge Innovation story, we decided also deavour, soon. commons for patient innovation”. to share them in a book called:
Celebrating 3 Years of Patient Innovation 71 6 / Patient Innovation Research Conference Presentations Conference Presentations
1 Advisory Board Meeting at MIT 12 12th Open and User Innovation Conference at Harvard Boston, USA, 2014 Business School Boston, USA, 2014 2 Patient Innovation Launch Event at CATÓLICA-LISBON Lisbon, Portugal, 2014 13 Academy of Management Meeting Philadelphia, USA, 2014 3 Technoport Trondheim, Norway, 2014 14 Shape Europe from Ideas to Action: Entrepreneurship and Innovation in Europe at Global Shapers 4 Crowdsourcing Week Global Community Singapore, 2014 Lisbon, Portugal, 2014
5 MIT Innovation Lab Meeting 15 MBA Alumni Association Boston, USA, 2014 Lisbon, Portugal, 2014
6 European Conference on Rare Diseases & Orphan 16 Innovation Days 2014 at Maison Internationale de la Products Cité Universitaire Berlin, Germany, 2014 Paris, France, 2014
7 Patient Innovation in the management of Multiple 17 Aging and Rheumatic Diseases Forum at Portuguese Sclerosis at SPEM - Portuguese Multiple Sclerosis League Against Rheumatic Diseases Society Lisbon, Portugal, 2014 Lisbon, Portugal, 2014 18 Medical Informatics at University of Porto 8 10th anniversary of Tal Golesworthy External Aortic Porto, Portugal, 2014 Support London, UK, 2014 19 Patient Innovation Care at Faculdade de Ciências da Saúde, Universidade da Beira Interior 9 Medical User Innovation Medical Commons Covilhã, Portugal, 2015 Conference New York, USA, 2014 20 Católica-Porto Research Seminar Porto, Portugal, 2015 10 Rethink and Redefine Health Care Management at Boundaryless Hospital 21 Advisory Board meeting at MIT Leipzig, Germany, 2014 Boston, USA, 2015
11 European Science Foundation at CUBE - CATÓLI- 22 International Health Management at Imperial Col- CA-LISBON Research Unit lege Business School London Lisbon, Portugal, 2014 London, UK, 2015
72 Celebrating 3 Years of Patient Innovation 6 / Patient Innovation Research Conference Presentations
32 22nd EurOMA Conference Neuchâtel, Switzerland, 2015
33 II Social Entrepeneurship Forum Porto, Portugal, 2015
34 Health Innovation and Operations Forum at CATÓLI- CA-LISBON Lisbon, Portugal, 2015
35 13th Open and User Innovation Society Meeting Lisbon, Portugal, 2015
36 1st Patient Innovation Awards Lisbon, Portugal, 2015 23 Roadshow: Investment Plan for Europe at CATÓLICA-LISBON 37 Academy of Management Meeting Lisbon, Portugal, 2015 Vancouver, Canada, 2015
24 XVI Congress of Portuguese Society of Physical Medi- 38 European Students' Conference at Charité – Universi- cine and Rehabilitation tätsmedizin Berlin Lisbon, Portugal, 2015 Berlin, Germany, 2015
25 Innovation in the health sector at Innovation Forum 39 Expert Experience Exchange Program at Hospital Israelita Albert Einstein Berlin, Germany, 2015 São Paulo, Brazil, 2015 40 Forum Social Economy – Organization 26 VI International Congress of the Child and Teenager and Cooperation at Universidade Lusíada de Lisboa Évora, Portugal, 2015 Lisbon, Portugal, 2015 41 Patient Innovation and adoption: the role of the con- 27 Forum on Healthcare Innovation at Harvard Business tent of social interactions at Rotterdam School School of Management Boston, USA, 2015 Rotterdam, Netherlands, 2015
28 Patient Innovation: how patients, by helping them- 42 Jumping start Healthcare Innovation: Citizen engage- selves, end-up helping many others like them ment, Sharing Economy, Online Communities at School of Public Health Brussels, Belgium, 2015 Lisbon, Portugal, 2015 43 TEDx at TUM 29 eHealth, mHealth and telemedicine at School Munich, Germany, 2015 of Public Health Lisbon, Portugal, 2015 44 XVIII Forum of Support to the Rheumatic Patient Lisbon, Portugal, 2015 30 Opening Up to an Era of Innovation: a New Start For Europe 45 - HSM Expomanagement Brussels, Belgium, 2015 São Paulo, Brazil, 2015
31 BIG Impact Award at SIWF’15 Social Innovation World 46 1st Iberic Symposium in Vertebro-Medullary lesions Forum Alcoitão, Portugal, 2015 Lisbon, Portugal, 2015
Celebrating 3 Years of Patient Innovation 73 6 / Patient Innovation Research Conference Presentations
47 Advisory Board meeting at MIT 62 China University Summer School Association – Boston, USA, 2016 Shanghai, China, 2016
48 Politecnico di Milano 63 Beyond the Lab exhibition opening at London Science Milan, Italy, 2016 Museum London, UK, 2016 49 World Government Summit 2016 – Edge of Government 64 14th Open and User Innovation Society meeting Dubai, UAE, 2016 at Harvard Business School Boston, USA, 2016 50 Health Marathon at Champalimaud Foundation Lisbon, Portugal, 2016 65 Festival Przemiany and Beyond the Lab exhibition at Centrum Nauki Kopernik 51 CATÓLICA-LISBON Alumni based in Madrid at Spanish Warsaw, Poland, 2016 Portuguese Embassy Madrid, Spain, 2016 66 Stanford Medicine X Stanford, USA, 2016 52 eHealth to better Health: engineering & tech will shape healthcare at Instituto Superior Técnico 67 University of San Diego Lisbon, Portugal, 2016 San Diego, USA, 2016
53 Rare Disease Day at i3S 68 APDC 26 Digital Business Congress Porto, Portugal, 2016 Lisbon, Portugal, 2016
54 AIMS2016 – the Annual International Medical Stu- 69 European Researchers Night at Ciência Viva dents Meeting Lisbon, Portugal, 2016 Lisbon, Portugal, 2016 70 Beyond the Lab exhibition opening at Tycho Brahe 55 ANDAR – Arthritis Day Planetarium Lisbon, Portugal, 2016 Copenhagen, Denmark, 2016
56 Direct Digital Manufacturing for Medicine 71 EIT Health Design Thinking Competition Marinha Grande, Portugal, 2016 Erlanger, Germany, 2016
57 My Future, my medicine 72 IPPOSI - Patients Driving Health Innovation Lisbon, Portugal, 2016 Conference Dublin, Ireland, 2016 58 Hospital Fernando da Fonseca Amadora, Portugal, 2016 73 Health 2.0 Meetup Lisbon, Portugal, 2016 59 HOPE (European Hospital and Healthcare Federation) and the Value Creation in Healthcare 74 ICF 2016 – International Annual Conference: Inspiring Lisbon, Portugal, 2016 CreARTivity Lisbon, Portugal, 2016 60 LOIS at Ludwig Boltzmann Gesellschaft GmbH Vienna, Austria, 2016 75 Summit on Sustainable Development Goals at New York Academy of Sciences 61 Building Global Entrepeneurs New York, USA, 2016 Lisbon, Portugal, 2016 76 XIV Symposium of Portuguese Association of Urology Lisbon, Portugal, 2016
74 Celebrating 3 Years of Patient Innovation 6 / Patient Innovation Research Conference Presentations
77 Patient Innovation Awards Forum at CATÓLICA-LIS- 93 Social Innovation and Performance at Universidade BON de Trás os Montes e Alto Douro Lisbon, Portugal, 2016 Vila Real, Portugal, 2017
78 2nd Patient Innovation Awards at Web Summit 94 TEDxFCTUNL Lisbon, Portugal, 2016 Lisbon, Portugal, 2017
79 Responsible Research and Innovation in action 95 SUPERA/TOM Porto Brussels, Belgium, 2016 Porto, Portugal, 2017
80 Leaping Forward 96 European Parliament Lisbon, Portugal, 2016 Brussels, Belgium, 2017
81 Portuguese Association for Hospital development 97 QUIS 2017 Lisbon, Portugal, 2016 Porto, Portugal, 2017
82 Leaping Forward 98 Carnegie Mellon Portugal Symposium 2017 at Porto Porto, Portugal, 2016 Business School Porto, Portugal, 2017 83 Oeiras International School Oeiras, Portugal, 2017 99 From interns to interns Faro, Portugal, 2017 84 Beyond the Lab exhibition opening at Ciência Viva Lisbon, Portugal, 2017 100 15th Open and User Innovation Society meeting Innsbruck, Austria, 2017 85 Lisbon Living+ Lisbon, Portugal, 2017 101 The Interdisciplinary Global Governance Symposium Frascati, Italy, 2017 86 Being Rare at i3S Porto, Portugal, 2017 102 Alcoitão Rehabilitation Center Alcoitão, Portugal, 2017 87 Women in Business Lisbon, Portugal, 2017 103 MIT Innovation Lab Meeting Boston, USA, 2017 88 Bayer Innovation Day Berlin, Germany, 2017 104 Next Level Lisbon, Portugal, 2017 89 Beyond the Lab exhibition panel Alcanena, Portugal, 2017 105 Association “Os Francisquinhos” Lisbon, Portugal, 2017 90 Leading the Heart Lisbon, Portugal, 2017 106 Cornell SC Johnson College of Business New York, USA, 2017 91 Portugal eHealth Summit Lisbon, Portugal, 2017 107 European Researchers Night at Ciência Viva Lisbon, Portugal, 2017 92 Responsible Research & Innovation in the Health Industry Brussels, Belgium, 2017
Celebrating 3 Years of Patient Innovation 75 Open and User Innovation 2015
The International Open and User Innovation Meeting (OUI) is the leading academic conference on Open and User Innovation and was hosted by CATÓLICA-LISBON School of Business & Economics, from July 13th to July 15th 2015
76 Celebrating 3 Years of Patient Innovation 6 / Patient Innovation Research Open and User Innovation 2015
alouste Gulbenkian Foun- and entrepreneurship, and specif- Cdation was the venue cho- ically in the area of open and user sen to bring together around 300 innovation. This is also reflected researchers from various disci- in the growing group of faculty plines (such as Innovation, Man- and researchers in this area that agement, Health, Strategic Man- are now active in the school, the agement, Organization, Design, establishment of a dual PhD pro- Marketing, Entrepreneurship, gram with Carnegie Mellon Uni- and Public Policy) to exchange versity in Technological Change recent research findings and and Entrepreneurship, a faculty new plans related to Open and exchange with MIT Sloan School User Innovation. The Patient In- of Management in the context novation Awards ceremony was of the Lisbon MBA, as well as a the event that opened the OUI. wide range of educational and The possibility to host this event is outreach activities designed to the result of the strong investment impact the community, such as of CATÓLICA-LISBON in the devel- Patient Innovation. opment of the area of innovation
28 OUI2015 The Open and User Innovation society meeting took place at Fundação Calouste Gulbenkian from July 13th to July 15th 2015.
Celebrating 3 Years of Patient Innovation 77 78 Celebrating 3 Years of Patient Innovation 7In the media
“ This is a brilliant project that will significantly help patients across many diseases.”
— Paula Brito e Costa FOUNDER AND PRESIDENT OF RARISSIMAS — ASSOCIAÇÃO DE DOENÇAS RARAS
Celebrating 3 Years of Patient Innovation 79 7 / In the media We are all over the news We are all over the news!
HORIZON, THE EU RESEARCH AND BUSINESS DAILY AFRICA (KENYA) RDP INTERNACIONAL (PORTUGAL) INNOVATION MAGAZINE (BELGIUM)
“New digital platform that allows pa- tients to share health solutions”, 2016 “The Patient Innovation project has been reaching patients from around the “Businessman Pedro Oliveira and medic WYBORCZA (POLSKA) world for two years now and helps them Helena Canhão manage an interdiscipli- improve their lives”, 2016 nary team that reviews innovative ideas by patients, making them accessible through the Patient Innovation website”, RTP (PORTUGAL) 2017 “Patients share ideas for their illness”, 2016
EL PAÍS BRASIL (BRASIL) NATIONAL GEOGRAPHIC POLSKA (POLSKA) “To share solutions that simply the life of who is sick and of who takes care of them. The idea resulted in a Portuguese “Oliveira and its colleagues created digital platform, developed by CATÓLI- Patient Innovation in February 2014, CA-LISBON, that reaches everyone in the and he says that they received more than world”, 2015 1200 independent submission proposals. “Pedro Oliveira and Helena Canhão are A medical team studies all of them; about the creators of the Portuguese Patient half of them is considered worthy of Innovation portal, encouraging patients RTP (PORTUGAL) being live on the website”, 2016 around the world to make their own solutions and medical inventions avail- able. Thanks to Patient Innovation, am- SANITÀ 24 (ITALY) ateur solutions and improvements have come to the widespread need, and some of them are already in widespread use in hospitals and medical facilities”, 2016 “It consists of an international, multilin- gual, and non profit platform that has “«User innovation»: when the patient is the purpose of facilitating the sharing promoting innovation in therapies”, 2016 of innovative solutions developed by patients and caregivers of any disease”, 2015 80 Celebrating 3 Years of Patient Innovation 7 / In the media We are all over the news
RTP/MARATONA DA SAÚDE ANTENA 1 (PORTUGAL) SIC NOTÍCIAS (PORTUGAL) (PORTUGAL)
“Created in the last year, it promotes the “On the World Health Day, Dr. Helena global sharing of small solution to im- Canhão was in the morning show to talk “This project, started in Portugal, has prove the well-being of several patients. about Patient Innovation, a two-year-old reached the five continents and has The first Patient Innovation Awards project that listens to patients and car- partnerships in 30 countries. So far it were delivered just now, honoring sever- egivers about solutions for several health has shared 500 innovations, over 200 al patients, caregivers, and international problems”, 2016 regarding neurodegenerative diseases, collaborators. A Portuguese caregiver and was able to help countless patients was honored”, 2015 through knowledge sharing”, 2015 SIC NOTÍCIAS (PORTUGAL)
SIC NOTÍCIAS (PORTUGAL) RTP (PORTUGAL)
“The biggest startups event has 600 keynote speakers from all over the world. “CATÓLICA-LISBON has a platform Pedro Oliveira and Helena Canhão featured among the 18 most innovative participate in a conference regarding “The London Science Museum selected projects for Harvard Business School, Health”, 2016 a single Portuguese Project, Patient among the 475 in contest from all over Innovation, to be part of an European the world. It consists of a project in exhibition that aims to highlight the Healthcare, called Patient Innovation”, SIC NOTÍCIAS (PORTUGAL) citizen’s importance in research and 2014 scientific innovation”, 2016
SIC (PORTUGAL) ANTENA 2 (PORTUGAL) “Beyond the Lab is an exhibition, open to the public, in Lisbon... That Future Today went visit. It shows cases of scients and non scients that with own means con- “Patient Innovation is a platform that “Medical and innovative solutions! Visit tribute to increase knowledge or even to was born as a research project, in the website www.patient-innovation.com improve lives”, 2017 Católica Lisbon, cooperating with other and discover a platform that promote the institutions and universities such as sharing of knowledge between patients MIT, Carnegie Mellon, among others, and caregivers”, 2015 TVI 24 (PORTUGAL) integrating academics and researchers in several areas (Health, Management, Engineering, Law)”, 2016 ↑ TVI (PORTUGAL)
“Portuguese platform shows the world simple ideas. This idea, shared all over the world, help the life of many people “Patient Innovation: social network who deal with diseases”, 2015 that allows the sharing of innovative solutions for rare diseases patients”, 2014
Celebrating 3 Years of Patient Innovation 81 7 / In the media We are all over the news
EXPRESSO (PORTUGAL) EXPRESSO (PORTUGAL) PÚBLICO (PORTUGAL)
“Patient Innovation is an online platform “Pedro Oliveira, professor at CATÓLI- where patients and caregivers can share CA-LISBON School of Business and the solutions they created or used to heal Economics, leads an innovative project or deal with a disease that they couldn’t that help projects idealized by patients “Social network for patients with rare solve in any other way, traditional or to come to life, in order to reduce their diseases opens until the end of the year”, not”, 2017 limitations”, 2016 2013
EXPRESSO (PORTUGAL) EXPRESSO (PORTUGAL) DIÁRIO DE NOTÍCIAS (PORTUGAL)
“But to make research centered on the “Pedro Oliveira had the idea of creating “It was the Summer of 2015, and Nuno patients is more than knowning about a social network were patients from doesn’t remember what he said at the their pathologies. According to Helena all over the world could exchange their time, when he put on, for the first time, Canhão, rheumatologist who co-leads innovative solutions. That’s how Patient the plastic hand, almost right away from Patient Innovation, it is also about giving Innovation was born”, 2016 the 3D printer that Patient Innovation voice to who participates in the process, has in its office, at CATÓLICA-LISBON”, either by sharing their needs, either by 2017 participations on the development pro- PÚBLICO (PORTUGAL) cess, testing and innovations improve- ment”, 2017 JORNAL DE NOTÍCIAS (PORTUGAL)
EXPRESSO (PORTUGAL)
“The Patient Innovation digital platform aims to create an international global “Nuno has eight years old and became sharing in which patients, and not only, “Patient Innovation is an online platform news after he got a hand made by other share with each other innovations to help used to share ideas the help in the daily skilled hands – who designed the model with rare diseases treatments”, 2017 lives of people who struggle with dis- -, a genius simplifying gadget that was eases. The ideas came from patients and made in a 3D printed located in the caregivers”, 2015 online Patient Innovation platform head- PÚBLICO (PORTUGAL) quarters, at CATÓLICA-LISBON”, 2016 ↑ OBSERVADOR (PORTUGAL)
EXPRESSO (PORTUGAL)
“The Patient Innovation Awards distin- “These five medical innovations were not guish patients and caregivers who create “A lot of people tried to prevent this plat- made by doctors”, 2016 solution that can help people dealing form from being successful. Fortunately with the same diseases. The seven win- we were able to launch the platform and ners were present at the Web Summit”, in two years we collected over than 600 2016 innovations, from a global community with over 37.000 diseases or caregivers”, 2016
82 Celebrating 3 Years of Patient Innovation 7 / In the media We are all over the news
OBSERVADOR (PORTUGAL) WORLD ECONOMIC FORUM THE INDEPENDENT (UK) (SWITZERLAND)
“The platform is based on a social network that connects patients with each “Patient Innovation is a website set up other and allows the sharing of solutions by a group at the Católica Lisbon School and treatments. The best ideas of this of Business and Economics. It allows platform will be recognized at the Web patients who’ve developed their own Summit”, 2017 “Patient Innovation is a website set up solutions for their illnesses to share what by a group at the CATÓLICA-LISBON they’ve learned or invented”, 2016 School of Business and Economics. It al- OBSERVADOR (PORTUGAL) lows patients who’ve developed their own solutions for their illnesses to share what VIRGIN (USA) they’ve learned or invented. The project leader is Pedro Oliveira. His original in- “Patient Innovation is an initiative led by terest was in user innovation generally: CATÓLICA-LISBON School of Business the part that people who use products and Economics and stimulates patients, and services can play in developing new caregivers and collaborators to develop strategies and procedures”, 2016 solutions thar can help improve the quality of life of who deals with the same diseases or physical conditions”, 2017 NEUE ZURCHER ZEITUNG “Patient Innovation is an impressive (SWITZERLAND) platform that helps patents drive inno- vation to find treatment options for their EL PAÍS (SPAIN) health problems. Patients often develop valuable solutions to help them cope with their disease. In some cases, they saved “With the aim of raising this still largely their own lives”, 2014 untapped idea, researchers from Portu- “Patient Innovation is a digital platform gal, Pedro Oliveira, from Catolica-Lisbon created by a group from CATÓLICA-LIS- School of Business and Economics recent- MIAMI HERALD (USA) BON School of Business and Economics. ly founded an Internet platform for It allows patients who have developed patients (www.patient-innovation.com). solutions for their illnesses to share what Registered users have the opportunity they have learned or invented”, 2016 to present self-developed strategies - chemistry and invasive procedures are “The SHOWER SHIRT® Co was the only not allowed - to deal with a disease that American-based organization receiving EL INDEPEDIENTE DE GRANADA affects them. Other members can then the award for ‘Patient Innovation,’ win- (SPAIN) test, evaluate and, if necessary, further ners were chosen from a pool of more develop the proposals”, 2015 than 200 innovation eligible products. The advisory board, a combination of faculty professors from the U.S. and “Regarding patients who develop Europe selected six winners based innovations to improve their quality of on Caregiver, Collaborator, and Patient life, the Portuguese organization Patient Innovation”, 2015 Innovation shows solutions from a 3D printer to a pack for diabetics designed by a 10-year-old girl”, 2016
Celebrating 3 Years of Patient Innovation 83 7 / In the media We are all over the news
29
PATIENT INNOVATION IN P3, PORTUGAL, 2013 patient innovation is explains Pedro Oliveira, CATÓLI- To access the content that a social network for CA-LISBON and Massachusetts others publish, there is a tool that patients Institute of Technology (MIT) re- allows the search by disease name searcher. What happens is that or by symptoms. The language is "the patients who are living with automatic, taking into account Pedro Oliveira crea- chronic diseases, for example, find the preference of the user, and ted a social network a way to live better with their own everything is translated. For the in which it is possible problem". For this reason, Pedro most skeptical, Pedro Oliveira to share experiences Oliveira and his multidisciplinary gives an example: an English en- team decided to find "a 'mecha- gineer had a problem in the aortic about a disease that nism' to facilitate the exchange of artery, without solution. He devel- you have or already solutions between patients", which oped the valve himself that was had. The aim is the mu- promotes the sharing of these in- implemented successfully by his tual aid and sharing of novative methods. Thus, Patient doctor in 2004, and solved the knowledge Innovation was born, a social net- problem. In fact, the valve has al- work aimed at helping those who ready been used in more than 100 "During our research, we re- have or have had serious illnesses. patients all over the world. alized that there is an excessive Then you just start sharing in- amount of solutions, either thera- formation, photos and other con- pies or medical equipment, which tent on a given disease. 29 HELENA AND PEDRO are developed by the patients”, Helenha Canhão and Pedro Oliveira, Patient Innovation project leaders.
84 Celebrating 3 Years of Patient Innovation 7 / In the media We are all over the news
(cont.) a universal platform information. In Portugal, the part- expensive, because as it is about nership was carried out with the rare diseases, there is some dif- National Association of Mental ficulty in recruiting enough pa- Another of the purpose is, pre- and Rare Diseases, Raríssimas, the tients”, explains the researcher. cisely, that the platform is univer- Diabetic Protective Association sal. For this reason, the team now in Portugal, which will also con- This sharing of information and tries to get around some bureau- trol, somehow, the content shared contacts may be helpful in that cratic problems and legal issues online by the patients. “We will sense. After all, just in Europe, (mainly in the United States) in not edit what people say, but if there are 30 million people with order to launch the network after eventually, someone suggests a rare diseases. the summer. dangerous idea, we can suggest Still, the platform is not stopped. a change and advise people”, Pe- Patients of various partner insti- dro says. tutions from five countries are Another of the path to follow already registered and share con- will be to enable patients to "de- tent so that the social network velop their own tests and clinical is already launched with some trials. Usually, these tests are very
PATIENT INNOVATION IN MEDGADGET
Guest speakers covered an im- healthcare startup pressive array of medtech subjects society conference and throughout the day. The issue of awards ceremony in funding, from both sides of the london table, was examined with talks by the teams behind crowd source platform Crowdcube and surgical simulator company Touch Surgery. Hosted by the UK-based Health- Patient Innovation – Patient care Startup Society, the confer- Innovation is based in Portugal ence and awards ceremony on but allows patients and caregivers December 17th brought together around the world to connect. Users nearly 200 participants, including create and share solutions for some big name medtech inno- health-related problems that they vators and startups, along with have developed independently tech experts, VCs, students, and or with collaborators. Founded in “doctorpreneurs.” Attendees had 2014, Patient Innovation boasts traveled to the conference from over 650 solutions from more than 30 as far as Silicon Valley, and while 40 countries, with solutions rang- the December weather in London ing from 3D-printed prosthetics to AWARD could never rival California, the clothing and smartphones apps, all Non-profit Startup of The Year Award fantastic venue in Kensington did presented in step-by-step guides boast resident flamingos! and how-to videos.
Celebrating 3 Years of Patient Innovation 85 7 / In the media We are all over the news
PATIENT INNOVATION IN MEDSHOP
Your favourite medical With enough frustration and Especially for medical patients, resource enough time online, we can all who may not have the resouces or probably find uncommon solutions energy to spend time searching. for life’s little challenges. But who What are they to do? has the time? What if there was a central- s a kid, I spent three and a ized place for innovative ideas Ahalf hours a week mowing that could revolutionize patient’s my parent´s lawn. Usually, it was “Patient Inno- lives? That would be invaluable. right about the time my friends vation (PI) helps Good news. Someone has al- were loading into my neighbor’s ready created this site. car to enjoy a summer Saturday. professionals It’s aimed at patients, but med- Spend the better part of a Satur- to further empow- ical professionals may also find it day in arduous labor and you turn valuable. It offers patients alterna- into a theoretical engineer. er their patients tive resources for improving their Although I never possessed the with a network quality of life. Patient Innovation technical skill or courage to modi- full of growing (PI) helps professionals to further fy my parents mower, I had perfect empower their patients with a net- designs in my head. I would cut solutions that are work full of growing solutions that mowing time by 66% with folding simple, organized are simple, organized, and genius. blades on each side, connected to the central axle via belts. It was and genius” beautiful, but the idea never left my head until just now. In 2013, a man from Massachu- setts, Paul McCarthy, decided he wasn’t going to allow his son, Leon, to go through life without the use of his hand. The boy was born with- out fingers on his left hand. Unlike me, with my ambitions of modding the family mower, McCarthy didn’t take the situation sitting down. He turned to the internet for plans, and found a video made by Ivan Owen, an American puppeteer and special effects artist who had sort of fallen into creating 3D printed prosthetics. McCarthy was inspired by Owen’s video, where his simple invention allowed for a 5 year-old boy to use a prosthetic limb for his son, Leon. Within months they had a working prosthetic. McCa- rthy gets “Dad of year” for sure.
31 LISA CRITES Lisa Crites, one of the 1st Patient Innovation Awards winner, and her innovation - The Shower ShirtTM.
86 Celebrating 3 Years of Patient Innovation 7 / In the media We are all over the news
(cont.)
Patient Innovation facilitates towards what we expect will I was in. The first option is a large cross patient communication for become a virtual incubator for search bar, and then just below it simple solutions. Although the site solutions that can be developed are the categories of conditions, management team is a collection to answer any patient’s needs.” symptoms, locations, activities, of decorated professionals, the ac- devices and therapies. tual content of the site is patient Searching for solutions is as and caregiver driven. THE SOLUTIONS ARE simple as either navigating to The goal, as PI puts it, “is a GENIUS your patient group or using the platform and social network that search features, standard on most allows patients and caregivers One very interesting innovation pages. For my test run, I clicked on to share their health solutions on the site is the Shower ShirtTM. “location”, navigated to leg (since I with other people.” Often times, It is a post surgical water-resistent have knee pain from all that lawn solutions that work for one set of garment, which was dreamt up by mowing), and found five solutions. patients, can apply to other pa- a patient who had undergone a While nothing specifically matched tients suffering through similar bilateral mastectomy. my current situation, which really challenges, even thought they With a standard recovery time isn’t that bad, I bookmarked the may not have been through the of 7-10 days, not showering wasn’t site for Mobilegs in case things same exact treatment. an option, and the plastic bags she worsen. Mobilegs is a genius im- The site encourages users to was using weren’t working very provement on crutches. share the simplest solutions, as it’s well. So, the Shower Shirt was born. often the little things that make True to the site’s mission, the Show- life more comfortable. er ShirtTM works for more than just THE LIBRARY OF INFOR- We’ll come back to some ac- post-mastectomy patients. There MATION IS GROWING tual examples in a bit, but i’m are at least 11 other candidates EVERY DAY thinking my modified lawnmower who benefit from this medical could have helped groundskeep- equipment. It is simple, inexpen- Once you register, you can also ers everywhere, if there had been sive and it matters to patients. set up your notifications to receive something like PI for lawn care Earle Dickson is probably the most updates. Because PI is an evolving back then. famous case of patient innovation. database you’ll want to stay con- Their platform challenge is the He was a caregiver for his wife, nected. Although there is already a meat and potatoes of their unique Josephine, who frequently cut ton of valuable information there, vision, and worth reading in its en- herself in the kitchen. Dickson’s you can imagine that over time tirety: “We are driven by a funda- prototype, a piece of gauze placed the library could grow immensely. mental challenge: to create a wide in the middle of a stip of adhesive That’s just what PI is hoping for. social network to connect patients tape, became the template or an You can also connect with Patient and enable sharing of solutions, industry which still lives: Band Aids. Innovation on Facebook, Twitter treatments, devices, and other You many have heard of them! (@PatientInov) and YouTube (var- relevant knowledge". ious languages represented) if you The result is Patient Innovation, prefer not to receive emails. In the a place where patients and those THE LIBRARY OF INFOR- long run, the more connected you who care about them can share MATION IS ORGANIZED are, the better. PI is well connected and access useful and otherwise themselves, with organizations like unknown solutions to cope with Getting started is very simple: Carnegie Mellon. their diseases. But we wish to go users register, find their patient even further. group and start sharing their solu- We want the medical and re- tions. I signed up by simply con- search communities on board, necting to my Facebook account, giving feedback and contributing clicking on one button, and voilá!
Celebrating 3 Years of Patient Innovation 87 88 Celebrating 3 Years of Patient Innovation Patient Innovation8 Team
“ I’m so proud to know the Patient Innovation team, both personally and professionally. It’s so exciting to see the Patient Innovation popularity to grow.”
— Lisa Crites CREATOR OF THE SHOWER SHIRTTM 1st PATIENT INNOVATION AWARD WINNER
Celebrating 3 Years of Patient Innovation 89 8 / Patient Innovation Team Main team
Main team
» Pedro Oliveira, Ph.D » Helena Canhão, MD, Ph.D
PATIENT INNOVATION FOUNDER, CHIEF MEDICAL OFFICER AND PRINCIPAL INVESTIGATOR AND PROJECT LEADER PROJECT LEADER
Pedro Oliveira is founder and project Helena is a Professor at Nova Medical leader of Patient Innovation. He is an School where she is also the Principal Associate Professor at CATÓLICA-LISBON Investigator of the EpiDoc Unit at CEDOC, School of Business & Economics, where the Chronic Diseases Research Centre he works as Senior Associate Dean for at Nova Medical School. She graduated Faculty and Research and as former Aca- (both Ph.D and Habilitation) in Medicine demic Director of the Lisbon MBA. He was an International (Rheumatology) from Lisbon School of Medicine, University Faculty Fellow at MIT-Sloan. Pedro received his Ph.D from of Lisbon. She also got a Master of Medical Sciences from The University of North Carolina at Chapel Hill and both Harvard Medical School, University of Harvard. his MSc and “licenciatura” from IST, Lisbon.
» Leid Zejnilovic, Ph.D » Salomé Azevedo
RESEARCH AND OPERATIONS OFFICER PLATFORM MANAGER
Leid is an Assistant Professor at Nova School Salomé is a Teaching Assistant (Opera- of Business and Economics. Leid received tions Management) at CATÓLICA-LISBON his dual Ph.D degree in Strategy, Entre- School of Business & Economics. She preneurship and Technological Change did an internship at Carnegie Mellon from Carnegie Mellon University and University’s Engineering and Public Policy CATÓLICA-LISBON, his MSc in Information Department. She has a Masters degree in Technology from Dzemal Bijedic University Biomedical Engineering from Instituto Superior and his BSc in Telecommunications from the University Técnico, Lisbon. of Sarajevo.
90 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Main team
» Ana Duarte » Patrícia Rodrigues
COMMUNICATION MANAGER DIGITAL MARKETING ADVISOR
Ana is the Communication Manager Patrícia did an Executive Advanced-Gradua- at Patient Innovation. Ana is also responsi- tion program in Innovation Management ble for searching and analyzing solutions and Entrepreneurship at CATÓLICA-LIS- for the platform. Ana has a BSc in Com- BON. She has a lot of experience working munication Sciences from Universidade in User Experience, Digital Marketing, da Beira Interior and a Master’s degree in Strategy and Innovation. the same area from Universidade do Porto.
» Maria João Gonçalves, MD » Miguel Nunes, MD
MEMBER OF THE MEDICAL TEAM MEMBER OF THE MEDICAL TEAM
Maria João Gonçalves graduated in Medi- Miguel Nunes graduated in Medicine at cine from the Universidade de Coimbra Universidade da Beira Interior, having and is a rheumatologist at the Hospital concluded his specialty in Stomatology, de Santa Maria, Lisbon. Maria João was a at Centro Hospitalar Lisboa Norte, where fellow in the Rheumatology Department he works. He was always interested in of the University College of London. the business world and entrepreneurship, having founded Blocomed®, in order to bring a surgery kit he developed for students to the market.
» Sofia Couto da Rocha Previous Patient Innovation team members:
MEMBER OF THE MEDICAL TEAM João Pedro Covas • Inês Viegas • Diana Nunes Doctor who got a degree at Nova Medi- • Pierre Gein • Carlos Henriques • Tomás Fidelis cal School, third year internet at Intern • Patrícia Pereira • Rita Oliveira • Marina Duarte Medicine, CHALGARVE. MBA by The Lis- • Sofia Esménio • Tiago Ramalho • Teresa Fernandes bon MBA. Degree “licenciada” in Minor • Rita Aroeira • Wendeline van der Feltz Science Politics, by FCSH, and at De- • Yulia Aleksandrova • Viktoriia Shcherbatiuk sign by LCF/CSM. Founder of the startup • Alexandra Ferreira • Matilde Czernin HealthTech&Design. PTCSRT from Harvard Medical School with FCT. President of the commission of Technologies of Information in Health at the Health Parliament Portugal.
Celebrating 3 Years of Patient Innovation 91 Advisory Board team members
92 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Advisory Board team members
» Richard Roberts » Eric von Hippel » Aaron Ciechanover
CHIEF SCIENTIFIC OFFICER, NEW ENGLAND PROFESSOR, MIT SLOAN SCHOOL PROFESSOR, TECHNION-ISRAEL INSTITUTE BIOLABS • NOBEL LAUREATE IN PHYSIOLOGY OF MANAGEMENT OF TECHNOLOGY, NOBEL LAUREATE IN OR MEDICINE 1993 CHEMISTRY 2004 Sir Richard Roberts is the Chief Scien- Prof. Eric von Hippel is the T. Wilson Prof. Aaron Ciechanover is a Distin- tific Officer at New England Biolabs, (1953) Professor of Management of guished Professor in the Technion-Is- a molecular biology reagent company Innovation and Engineering Systems at rael Institute of Technology in Haifa. located in Beverley, Massachusetts. the MIT Sloan School of Management. Ciechanover is a member (Foreign) of Sir Richard Roberts was awarded the His research discovers and explores the National Academy of Sciences of Nobel Prize in Medicine in 1993 for the patterns in the sources of innovation the USA and the Israeli Academy of discovery of split genes of RNA splicing and develops new processes to im- Sciences and Humanities, among oth- and his development of restriction en- prove the innovation process. In No- ers. Prof. Aaron Ciechanover received zymes as molecular biology tools. This vember 2015 Prof. Eric von Hippel the 2000 Albert Lasket Award and the discovery led to decisive progress in passed 50 000 citations milestone on Nobel Prize in Chemistry in 2004 for many fields including cancer research. Google Scholar. the discovery of the ubiquitin system and its importance as an important platform for drug development.
» Katherine Strandburg » Robert Langer » Lee Fleming
PROFESSOR, NEW YORK UNIVERSITY SCHOOL PROFESSOR, MIT PROFESSOR, UNIVERSITY OF CALIFORNIA, OF LAW BERKELEY
Prof. Katherine Strandburg is a Profes- Prof. Robert Langer is a leading chem- Prof. Lee Fleming is a Professor at Uni- sor of Law at NYU School of Law. She ical engineer and entrepreneur. He versity of California, Berkeley and the is an expert in patent law, innovation is one of the 11 Institute Professors Faculty Director of the Coleman Fung policy, and information privacy law. at MIT, the highest honor that can be Institute of Engineering Leadership. Strandburg’s research considers the awarded to a faculty member. His research investigates how man- implications of user and collabora- Langer is an internationally acclaimed agers can increase their organization’s tive innovation for patent law and of inventor and engineer, with over 2 000 chances of inventing a breakthrough, “big data” for privacy law. Strandburg patents and published articles. He is a through types of collaboration, the clerked for Judge Richard Cudahy of pioneer in drug delivery, tissue engi- integration of scientific and empirical the US Court of Appeals for the Sev- neering, and nanotechnology. search strategies, and the recombina- enth Circuit. tion of diverse technologies.
Celebrating 3 Years of Patient Innovation 93 8 / Patient Innovation Team Advisory Board meetings
32
Advisory Board meetings
94 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Advisory Board meetings
he Patient Innovation team The third meeting with the AB Tmeets every year with its was on January 28th 2016. The PI Advisory Board (AB) members. In these meetings, team met again with the AB at MIT In these meetings, the Patient the Patient to discuss the progress and the Innovation project is discussed: an Innovation project future of the project, as well as evaluation about what the pro- to select the winners of the 2nd PI ject has accomplished so far is un- is discussed: an Awards. dertaken and the ideas and pros- evaluation about This time the AB selected seven pects for the future are also de- winners, including the new catego- bated with our advisors. So far, what the project has ry - Serial Patient Innovation - for there have been three meetings accomplished so far a patient who developed sever- with the AB. is undertaken, and al innovations and also created On February 3rd 2014 the Pa- a website to share his solutions tient Innovation team met with its the ideas and pros- with others. AB for the first time at MIT Sloan, pects for the future Boston, USA, with: Lee Fleming, Robert Langer, Richard Roberts, are also debated Katherine Strandburg and Eric von with our advisors Hippel. In this meeting, Patient 32 2014 MEETING Innovation received some strate- On November 1st 2014 the Pa- The Patient Innovation team in a meeting gic advices, and some structural tient Innovation team met again with the Advisory Board, on November 2015. changes were made, including the with the AB at MIT Sloan in Boston. possibility of allowing users to see It was another inspiring meeting. solutions without having to regis- The 30 semi-finalists of the PI 33 2016 MEETING The Patient Innovation team in a meet- ter and the removal of any drug Awards were presented and six ing with the Advisory Board, on January and food related content from the winners were selected by the AB. 2016. platform.
33
Celebrating 3 Years of Patient Innovation 95 Supporters
96 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Supporters
Carliss Baldwin James Boyle António Câmara PROFESSOR, HARVARD PROFESSOR, SCHOOL OF BUSINESS SCHOOL LAW DUKE UNIVERSITY CEO, YDREAMS HARVARD UNIVERSITY
Maria Carmo- Alexandre António Castro Caldas Fonseca Coutinho
PROFESSOR AND PRESIDENT, INSTITUTO COORDINATOR, DIRECTOR, INSTITUTO DE MEDICINA CONSELHO NACIONAL DE CIÊNCIAS DA MOLECULAR DE CIÊNCIA E SAÚDE, UNIVERSIDADE PROFESSOR, FMUL TECNOLOGIA CATÓLICA PORTUGUESA
Lawrence Kathrin Joi Ito Möslein Lessig
PROFESSOR, DIRECTOR, MIT MEDIA PROFESSOR, HARVARD UNIVERSITÄT LAB LAW SCHOOL ERLANGEN-NÜRNBERG HARVARD UNIVERSITY & HHL LEIPZIG
José Fonseca Erich R. de Moura Reinhardt Aleda Roth
DIRECTOR, CARNEGIE CHAIRMAN, EXECUTIVE MELLON PORTUGAL PROFESSOR, MANAGING BOARD PROGRAM CLEMSON UNIVERSITY MEDICAL VALLEY EMN PROFESSOR, CARNEGIE E.V. MELLON UNIVERSITY
Francisco Artur Santos Veloso Silva
PROFESSOR, FORMER PRESIDENT OF THE DEAN OF CATÓLICA- BOARD OF TRUSTEES LISBON SCHOOL OF THE CALOUSTE OF BUSINESS & GULBENKIAN ECONOMICS. DEAN FOUNDATION OF IMPERIAL COLLEGE BUSINESS SCHOOL
Celebrating 3 Years of Patient Innovation 97 8 / Patient Innovation Team Local Chapter Berlin Local Chapter Berlin
98 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Local Chapter Berlin
34 BERLIN The first Patient Innovation Local Chapter - Local Chapter Berlin.
A Local Chapter (LC) of Patient • PROVISION of help to patients, Innovation (PI) is a non-profit col- caregivers and collaborators in the laborative association created be- domain or geographical region tween PI and an individual or a of interest, in terms of usage of team from any part of the globe PI platform. that showed interest in working with PI. The LC is established to spe- The first Patient Innovation Lo- cifically cover topics and subjects cal Chapter was founded in Berlin, particularly relevant for a given with the following team members: domain of interest or a geographi- cal region, and acts in compliance • Ana Luísa Marcelino; with PI values, goals and terms of • Greta Pierchalla; service. The LC aims to serve the • Iris von Wunsch de Teruel; needs of a regional community of interest, in terms of: • Adriana Perdigão; • Cynthia de Carvalho Fischer; • PRESENTATION of PI content • Carolina Czichos; in local languages; • Dominik Soll; • Maria Salazar de Sousa Mann. • PROMOTION of the content in locally organized events;
• SEARCH and facilitation of con- tent originating in the geographical region or the domain of interest, according to the terms and services of the PI platform;
Celebrating 3 Years of Patient Innovation 99 8 / Patient Innovation Team Partnerships Partnerships
ur project can only achieve Oits full potential if a large number of patients and caregivers are attracted to the platform. For that reason, it is important to in- volve patient associations in our initiative. We are very happy with the positive response from patient groups and associations of various types of diseases, and from differ- ent geographical ranges across all around the world. We have a portfolio of partner associations in Australia, Brazil, Malaysia, Por- tugal, Spain, and the UK, among others.
100 Celebrating 3 Years of Patient Innovation 8 / Patient Innovation Team Partnerships
These are the associations that already signed collaboration agreements with Patient Innovation:
Celebrating 3 Years of Patient Innovation 101 What our Community members have been saying
102 Celebrating 3 Years of Patient Innovation I was thinking about building a platform like Patient Innovation“ myself. I’m very glad the Patient Innovation team did it and invited me to be a part of it.”
Giesbert Nijhuis PATIENT (TETRAPLEGIA)
I care about people, and always want to do something“ that can make their lives easier and Bhuvnesh Tanwar happier. I didn’t know Patient Innovation, but I COLLABORATOR was really happy when they asked me to join the platform.” }
I’m deeply grateful to get to know the Patient Innovation“ team. They have my admiration. I feel like I’m
riding on the shoulders of giants!”
Louis Plante PATIENT (CYSTIC FIBROSIS) } We often feel that patients have solutions that Luís Quaresma are“ not being shared with the community. PATIENT (SPINA BIFIDA) But they can only be helpful when shared. Patient Innovation helps with this.”
Thank you Patient Innovation. You are an amazing group.“ Thank you so much for our time together. We will cherish it in our hearts forever!”
Doron Somer CAREGIVER (AUTISM)
The Patient Innovation platform is great because“ it’s a way to help caregivers share their Maria do Céu Ramalhete CAREGIVER (OSTEOGENESIS solutions and experience with each other. This can IMPERFECTA) help improve our children’s quality of life.” }
Celebrating 3 Years of Patient Innovation 103
Thank you. solutions, and prototypes of a new Be part revolution. Keep sharing ideas, your innovations.
104 Celebrating 3 Years of Patient Innovation
Thank you. solutions, and prototypes of a new Be part revolution. Keep sharing ideas, your innovations.
105 Celebrating 3 Years of Patient Innovation
Celebrating 3 Years of Patient Innovation, Report 2014-2017
Patient Innovation CATÓLICA-LISBON School of Business & Economics, Palma de Cima 1649-023 Lisboa, Portugal
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