Patient Innovation - Our Journey Together

ContentsLetter from the Team 3What We Are Up to 4Patient Innovation Launch Event 71st Patient Innovation Awards 9Giving a Hand 16LPDCR Partnership 18SOS Refugees 19Local Chapter 20Research & Development 21In the Media 24Partnerships 262nd Patient Innovation Awards 27Sponsors 282 Our Journey Together

Letter from the TeamPatient Innovation was created with the purpose of helpingimprove lives. In this year we managed to get to more people: Wecelebrated patients and caregivers, with the 1st Patient InnovationAwards, last July, and the number of solutions on our platform hasbeen increasing everyday. Marc Chagall once said: “If I create from the heart, nearly everything works. If from the head, almost nothing”. That’s what happens with the solutions that patients and caregivers share on our platform. They create solutions because they want to help a loved one, and they create something with the purpose of giving them a better and happier life. We all grow when we share. Each solution is a piece of Patient Innovation’s heart. We wish that your Christmas and New Year is filled with sharing and happy moments. Merry Christmas and Happy 2016, The Patient Innovation Team 3

Patient Innovation What We Are Up toTeam: Patient Innovation is a nonprofit, international,Pedro Oliveira multilingual platform and social network whereHelena Canhão solutions created by patients or caregivers can beLeid Zejnilovic shared and improved in a collaborative way.Salomé AzevedoAna Duarte The project is the result of our research in the areaDiana Nunes of user innovation, in collaboration with Prof. Eric vonMaria João Gonçalves Hippel from MIT. We observed that patients of chronicMiguel Nunes diseases often developed innovative solutions, treatments and medical devices to help them cope withPrevious Patient their health conditions. In some cases, the patients wereInnovation Collaborators: even able to save their own lives. However, these innovations usually occurred behind closed doors andPierre Gein Carolina Coimbra might never have been known or used by anyone else.Tomás Fidelis But if these successful innovations and knowledge werePatrícia Pereira shared with other patients with similar needs, they couldRita Oliveira improve many lives. With this in mind we startedMarina Duarte developing the Patient Innovation platform.Sofia EsménioTiago Ramalho Since its establishment almost 450 solutionsTeresa have been published. This report was composed toFernandes present and summarize the information on the extensiveRita Aroeira range of activities and achievements undertaken sinceWendeline van the platform was born.der FeltzYuliaAleksandrovaViktoriiaShcherbatiukAlexandraFerreiraMatilde CzerninOur Journey Together 4

Advisory Board Meetings On February 3, 2014 the Patient Innovation Advisory Board Members:team met with its Advisory Board for the first time at Sir Richard J. Roberts (Nobel Laureate inMIT Sloan, Boston, USA: Lee Fleming, Robert Physiology or Medicine)Langer, Richard Roberts, Katherine Strandburg, Eric Eric von Hippel (Professor, MIT)von Hippel. Aaron Ciechanover (Nobel Laureate in Chemistry) In this meeting Patient Innovation received Katherine Strandburg (Professor, NYU)some strategic advices, and some structural changes Robert Langer (Professor, MIT)succeeded, including the possibility of allowing Lee Fleming (Professor, University ofusers to see solutions without having to register California)and the removal of any drug and food related contentfrom the platform. On November 1, 2014 the Patient Innovationteam met again with the Advisory Board at MIT Sloanin Boston on November 1, 2014. It was another superinspiring meeting. The 30 semi-finalists of the PIAward were presented and six were selected bythe Board.5 Our Journey Together 5

Health Innovation Challenge, Harvard Business School Patient Innovation participated in the Harvard Health Innovation Challenge, onNovember 15, 2014. The project was selected as one of the 18 semi-finalistsfrom 478 applications (from institutions such as Stanford University, ClevelandClinic, Mayo Clinic, Kaiser Permanente, MD Anderson, Intermountain,Massachusetts General Hospital, and many more). Patient Innovation was the only non-US project among all the semi-finalists.Also, Patient Innovation was the most viewed (over 25,600 visualizations), mostapplauded, and commented project in the competition. Even though PatientInnovation did not win (others were considered to have a higher impact on the UShealth care system), we were very happy with the overall outcome and feel inspiredby the overwhelming support given by our followers. Thank you!“This is an outstanding social media use that shouldhelp many disadvantaged people” Sir Richard Roberts Chief Scientist, New England Biolabs Nobel Laureate of Medicine and Physiology or Medicine 1993 Patient Innovation Advisory MemberOur Journey Together 6

Patient Innovation Launch Event Our social network and research initiative was publicly presented at The Patient Innovation Launch Event, held at Católica-Lisbon in Portugal on February 7, 2014. This event brought together patient innovators, scholars and supporters of our non-profit, open and international platform and social network. We had the pleasure of featuring a group of patients/collaborators who shared their real problems and their amazing solutions, such as Mr Tal Golesworthy (\"the man who fixed his heart\"), Ana Luísa Vaz (\"the type 1 diabetes girl who, against all odds, runs marathons\"), Ivan Owen (\"the artist who prints fingers and hands in a 3D-printer\"). Along with them, some important members of the scientific community, such as Prof Eric von Hippel, Sir Richard Roberts and Mr Harry DeMonaco gave remarkable talks. Patient Innovation goes live! 7Our Journey Together

When everyone got to officially know us An incredible day where patients and caregivers were celebrated asinnovators and their motivation behind the creation of these solutions washighlighted. Participants from several different fields got together to discuss thestatus quo of healthcare technology and the importance of empowering people tocreate and share their own solutions.Louis Plante (creator of The Frequencer™)Diogo Lopes (founder of Charcot-Marie-Tooth patient’s association) “The Patient Innovation platform is a project with 8 potentially very great social value” Eric von Hippel Professor, MIT Sloan School of Management Patient Innovation Advisory MemberOur Journey Together

The 1st Patient Innovation Awards Each year the Patient Innovation team celebrates the achievement and contribution of patient Innovators through the Patient Innovation Awards. The deadline to submit an innovative solution for the 1st edition was October 22, 2014. The Patient Innovation Awards provide the opportunity to recognize any Patient, Caregiver or Collaborator who developed a solution to help him/her deal with a health condition or disease. The Patient Innovation Awards honor innovators into three separate categories, according to their relation with need: • Patient Innovation Award – Innovation developed by a patient, to improve his/her own health condition. • Caregiver Innovation Award – Innovation developed by a caregiver, to help improve the health condition of a loved one. • Collaborator Innovation Award – Innovation developed by a collaborator, to help improve the health condition of someone outside the family of friend’s circle. The PI team did an initial screening of more than 200 innovations that were considered eligible and then made a short list of ten innovations per category. This list was elaborated based on both the potential and impact of the solution in helping others with the same condition to manage their care process. Two additional criteria were taking into account regarding the innovator: the recognition as an inspirational role model for the society, and the commitment devoted to diffuse the solution, empowering more patients and caregivers. The final decision was taken by the Advisory Board, who when faced outstanding solutions, could not restrict themselves to one winner per category and awarded a total of six winners, which were announced on February 6, 2015.Our Journey Together 9

… And the Patient Innovation Award goes to Category: “Patient” Louis Plante (Canada) with the Frequencer™ - A device that uses sound waves to help clearing the lungs of patients with cystic fibrosis. The Frequencer™ is the first device to deliver low-energy resonant (acoustic) vibrations, reducing mucus viscosity and promoting mucus flow in patients with this condition. Watch his speech here.Lisa Crites (USA) with the ShowerShirt™ - A water-resistant garment thatenables patients who underwent amastectomy to shower normally andnavigate these difficult moments withdignity. The Shower Shirt™ has obtainedFDA approval and already crossedgeographic borders reaching 36 countries.Watch her speech here.Our Journey Together 10

… And the Patient Innovation Award goes toTal Golesworthy (UK) with theExovasc™ – A personalized external aorticroot support to address his own aorticproblem, which is a consequence of Tal beinga Marfan syndrome patient. Since this supportwas installed on Tal’s heart 10 years ago, thedevice has been implemented in over 50patients to prevent aorta rupture. Watch hisspeech here.Category: “Caregiver” Debby Elnatan (Israel) with Upsee™ - a mobility device that allows Debby’s son, who has cerebral palsy, and other children with motor impairment to stand and walk with the help of an adult. Within the first 24 hours of Upsee in the global market there were about 1300 orders placed and 2000 orders placed within the first 48 hours. Over 6000 Upsee harnesses have been sold in over 120 countries around the world. Watch her speech here.Our Journey Together 11

… And the Patient Innovation Award goes to Joaquina Teixeira (Portugal) with helium balloons - Colorful helium balloons placed at different heights all over the house helped Joaquina stimulate her son, who suffers from Angelman syndrome, to stand and walk. This simple tip has helped and inspired several parents worldwide to never give up on their kids. Watch her speech here. Category: “Collaborator”Ivan Owen (USA) with 3D-printed 12prosthetic hands - From a puppeteer to a3D-printed prosthetic hand and arm maker,Ivan Owen challenged the prosthesis industry.He started developing a hand for a carpenter,Richard van As, and then for Liam, a kid whowas born without a hand, due to a congenitalcondition, to be able to pack his bag to school,and ended up inspiring a large and growingnetwork of volunteers and “makers” to help“giving a hand” to a child. Watch his speechhere. Our Journey Together

The Patient Innovation Awards Ceremony The six finalists were awarded in a ceremony, which featured a full auditorium, at the Calouste Gulbenkian Foundation, in Lisbon, on July 13 2015. The Patient Innovation Awards ceremony received the High Patronage of His Excellency The President of the Portuguese Republic, and was carried out with the participation of worldwide prestigious speakers. In the first speech, Francisco Veloso, the Dean of Católica Lisbon School of Business and Economics, welcomed the audience emphasizing the presence of notable academic and public figures (watch it here). Carlos Moedas, the European Commissioner for Research, Science and Innovation, congratulated the Patient Innovation project for inspiring Europe to “embrace open innovation of all kinds”. In his speech, he had warm words for the finalists remembering the importance of their innovations to society (watch it here).Eric von Hippel (Professor at MIT and PI Advisory Board Member)Francisco Veloso (Dean, Católica Lisbon School of Business & Economics)Our Journey Together 13

The Patient Innovation Awards Ceremony Carlos Moedas (European Commissioner for Research, Science and Innovation) Prof. Eric von Hippel, representing the Patient Innovation Advisory Board,gave an incredible and inspiring talk about how to better understand the power ofcitizen innovation and the consequent effects of adopting and diffusing user-drivensolutions. (watch it here). The six award winners had their time on stage to explain their own storyhighlighting the need and the motivation behind their solution to a full auditorium(read their full stories here). Artur Santos Silva, president of Fundação Calouste Gulbenkian, closed theevent with an inspiring speech (watch it here). The PI Awards were sponsored by Fundação Para a Ciência e Tecnologia(FCT), Carnegie Mellon University Portugal Program, Fundação CalousteGulbenkian, Janssen, Lilly, MSD, Pfizer, Bayer, Apifarma, and RTP.Our Journey Together 14

Open and User Innovation Meeting The International Open and User Innovation Meeting (OUI) is the leading academic conference on Open and User Innovation and was hosted this year by Católica Lisbon School of Business & Economics, from July 13th to July 15th. The Calouste Gulbenkian Foundation was the venue chosen to gather around 200 researchers from various disciplines (such as innovation management, health, strategic management, organization, design, marketing, entrepreneurship, and public policy) to exchange recent research findings and new plans related to Open and User Innovation. The Patient Innovation Awards ceremony was the event that opened the OUI. The possibility to host this event is a result of the strong investment of Católica Lisbon in the development of the area of innovation and entrepreneurship, and specifically in the area of open and user innovation. This is also reflected in the growing group of faculty and researchers in this area that are now active in the school; the establishment of a dual PhD program with Carnegie Mellon University in Technological Change and Entrepreneurship, a faculty exchange with MIT Sloan School of Management in the context of the Lisbon MBA, as well as a wide range of educational and outreach activities designed to impact the community, such as Patient Innovation.Our Journey Together 15

Giving a Hand One of the goals of Patient Innovation is to help patients and caregivers develop their own solutions and on July 14, the PI team with Ivan Owen’s collaboration gave a 3D printed had and arm to a seven-year-old Portuguese boy, Nuno. This moment would not have happened without the persistence of Nuno’s mother, Carla, who contacted the team to help her 3D print a hand and arm for her son, based on 3D printed hand models created by Ivan Owen and his team. After analyzing Nuno’s case, the team joined forces and started working. Thanks to Paulo Veloso, from Media Markt, all pieces were printed on time, and Ivan and PI were able to assemble all the parts in one morning.Our Journey Together 16

Giving a Hand Nuno, who is also our youngest fellow in the team, also contributed by sewing some pieces of his new red and white gadget. A heartwarming video featuring both the making of a 3D printed arm and hand, and Nuno experiencing his new gadget for the first time can be watched here. “This platform has enormous potential to improve the 17 lives of rare diseases sufferers. Patients and caregivers are innovators in their own right” Katherine J. Strandburg Professor, New York University School of Lawt Patient Innovation Advisory MemberOur Journey Together

Patient Innovation feat. Liga Portuguesa Contra as DoençasReumáticas Patient Innovation has been developing some interesting activities with theirpartners Liga Portuguesa Contra as Doenças Reumáticas (LPCDR). The first one was the Patient Innovation Challenge Day was a contestdeveloped by PI and Liga Portuguesa Contra as Doenças Reumáticas launched onSeptember 12th 2015 to celebrate the world Arthiritis Day, October 12. Thecontest purpose was to stimulate platform members (and get new ones) to identifyand share innovative solutions, developed by patients and caregivers, who sufferfrom any kind of rheumatic diseases, which help them improve their lives. Lisa Crites, Joaquina Teixeira, PIAward winners both made a video to helppromote the challenge; Nuno, the seven-year-old little guy who got a 3D printedhand and arm from PI and Ivan Owen,also contributed with this video. After receiving several candidates,the PI team and LPCDR selected twowinners: Louis Plante, from Canada, andCarina Antunes, from Portugal. They bothgot each an Amazon Gift Card as theirprize. The winners were selected by thehigher number of votes (likes onFacebook, the PI platform and also onTwitter), and the all of the solutions wereevaluated by the PI team and LPCDR. Patient Innovation also participated on the XVIII Fórum de Apoio ao Doente Reumático, an event hosted by our partners LPCDR, in Lisbon, on October 30 and 31 2015, where the PI team interacted with some patients, and Pedro Oliveira presented the PI project.Our Journey Together 18

SOS Refugees by Patient Innovation In October 2015, Patient Innovation went to Macedonia to help the refugees. SOS Refugees by Patient Innovation was an initiative that took Pedro Oliveira, PI Founder and Project Leader, and Leid Zejnilovic, Research and Operations Officer, to Tabanovce, on the border between Macedonia and Serbia, from the border with Greece, where they bought hot meals, clothing and shoes for the refugees. Patient Innovation created a crowdfunding campaign, via PPL, with thepurpose of raising 3000€ to buy provisions in Tabanovce. By the end of the campaign6823€ were raised, on 27th October. The campaign video can be watched here. Thanks to the generosity of the campaign supporters, PI SOS refugees was ableto offer food, beverages, winter clothes and shoes, including: 2400 hot soup meals(that were served at the arrival of four different trains), 6000 juices, 3000 pieces ofchicken-paté, 3000 pieces of bread, 2000 croissants, about 1500 bananas, 125 pairsof shoes (mostly to children and young adults, about 1200 pairs of socks, about 150gloves, 150 scarfs and 150 winter hats. In addition to the distribution of the goods,among other things, we helped a 105–year-old blind refugee (who was traveling withher 67-year-old son) to reach the border with Serbia. All the funds collected reverted directly to the refugees - travel, accommodation,crowdfunding campaign were covered by the promoters of this initiative.Our Journey Together 19

Local Chapter Berlin Patient Innovation has a piece of its heart in Berlin! Good news for the German speaking users. The Patient Innovation platform isalso available in German since November 3rd 2015. Thanks to the new team membersfrom Berlin are: Ana Luísa Marcelino, Greta Pierchalla, Iris von Wunsch de Teruel,Adriana Perdigão, Cynthia de Carvalho Fischer, Carolina Czichos, Dominik Soll,Maria Salazar de Sousa Mann. The local chapter is a non-profit collaboration that consists on representing,developing and promoting contents of interest for Patient Innovation outside itsheadquarter city (Lisbon).Patient Innovation is also recruiting exchange students who speak French,Spanish and German for making the translation of all the platform content.“I firmly believe it is an initiative at the cutting edge ofresearch and innovation, and a project with thepotential to improve the lives of many around theworld” Francisco VelosoProfessor, Dean of Católica Lisbon School of Business and Economics Patient Innovation SupporterOur Journey Together 20

Patient Innovation R&DResearch and OutreachOne important component of our project is the research in the field of Open and UserInnovation that supports our decisions in the future of Patient Innovation.DOCTORAL DISSERTATIONSDr. Leid Zejnilovic, the Research and Operations Officer at Patient Innovation,successfully defended his doctoral dissertation on \"Essays in User Innovation\" onOctober 23, 2014. He was graduated Magna Cum Laude from the Doctoral Program inTechnological Change and Entrepreneurship (TCE) jointly offered by Carnegie MellonUniversity, Católica Lisbon School of Business and Economics and InstitutoSuperior Técnico. Two papers of his dissertation focus on Patient Innovation.RESEARCH ARTICLES ONLINE POSTER\"Patient innovation under rare diseases and \"Diffusion as a validation practice: learningchronic needs\" by P. Oliveira, L. Zejnilovic, H. from patient innovators\" by Fidelis, ZejnilovicCanhão, E. von Hippel. Extended abstract and Oliveira at European Conference for Rarepublished at Orphanet Journal of Rare Diseases, Diseases2014, 9 (Suppl 1):O33. “Innovations by and for the patients: and how“Patient Innovation under Rare Diseases and can we integrate them into the future healthChronic Needs\" by P. Oliveira, L. Zejnilovic, H. care system” by L. Zejnilovic, P. Oliveira, H.Canhão and Eric von Hippel. Published at Canhão. Forthcoming at Boundaryless HospitalOrphanet Journal of Rare Diseases, 2015, 10:41 (edited book) by Springer.Our Journey Together 21

Patient Innovation R&DConference PresentationsA – ISPIM Innovation Symposium, Melbourne, Adolescente, Lisboa, Portugal Y – Academy of Management Meeting, Vancouver,AustraliaB – MIT Innovation Lab Meetings, Boston, USA CanadaC – Latin Ibero-American Management of Z – Patient Innovation Presentation – GuardaTechnology Association Conference, Porto, AA - Presentation of the project @ eHealth,Portugal mHealth and telemedicine, Escola Nacional deD – User and Open Innovation Workshop, Brighton, Saúde Pública (ENSP), Lisbon, PortugalUK AB - Presentation of the project @ Opening Up ToE – International Annual EurOMA Conference, An Era Of Innovation - A New Start For Europe,Dublin, Ireland 22nd and 23rd June 2015, Brussels, BelgiumF – Peter Pribilla Conference, Technical University AC - Presentation of the project in the contest BIGof Munich, Munich, Germany Impact Award, SIWF’15 Social Innovation WorldG – International Conference on Drug Discovery Forum, Lisbon, Portugaland Therapy, Dubai, UAE AD - Participation in panel discussion onH – Crowdsourcing Week Global, Singapore \"Developing a Patient-Centered Healthcare DeliveryI – Technoport, Trondheim, Norway Systems\", 22nd EurOMA Conference, Porto,J – Technological Innovation, Entrepreneurship and PortugalStrategic Management (TIES) seminar, MIT Sloan AE - TEDx in Munich at TUM, Munich, GermanyManagement School, Boston, USA AF - “Jumping start Healthcare Innovation: CitizenK – Forum on Health Care Innovation, Boston USA engagement, Sharing Economy, OnlineL – European Conference on Rare Diseases & Communities” @ CSW Europe 2014, Brussels,Orphan Products, Berlin, Germany BelgiumM – Medical User Innovation and Medical AG - “Oportunidades, Desafios e Boas Práticas naKnowledge Commons Workshop, Engelberg Center Economia Social” (Part I), Fórum Economia Socialon Innovation Law & Policy at NYU School of Law, - Organização e Cooperação no Sector SolidárioNew York, USA CCDR – Évora, PortugalN – The Patient Innovation Forum, University of AH - “Innovation in drug research development andMinnesota, Minneapolis, Minnesota, USA healthcare community”, Expert ExperienceO - 12th Open and User Innovation Workshop, Exchange Program, Berlin, Germany AI - “Patient innovation and adoption: the role of theHarvard Business School, Cambridge, USA content of social interactions”, Rotterdam School ofP – Global Shapers Community, Lisbon;Q – Boundaryless Hospital, Leipzig, Germany. Management, Rotterdam, HollandR – Presentation of Patient Innovation to medicalstudents at Medical school from Universidade daBeira Interior, Covilhã, PortugalS – Patient Innovation Forum at INSPER, SãoPaulo, BrasilT – Forum on Health Care Innovation Conference,Harvard Business School, Boston, USAU – Academy of Management Meeting,Philadelphia, USAV – CIRCLE, New York University Lund University,New York, USAW – XVI Congresso Sociedade Portuguesa deMedicina Física e Reabilitação, Lisboa, PortugalX – VI Congresso Internacional da Criança e doOur Journey Together 22

Platform DevelopmentNumber of Solutions Solutions published on Patient Innovation’s Platform 450 400 350 300 250 200 150 100 50 0 Time (Month/Year)After 22 months live, the Patient Innovation medical team screened 450solutions, which are live. On the Patient Innovation platform, patients andcaregivers can search and share solutions from USA to South Korea. Innovatorsfrom more than 30 countries around the world have already published at leastone solution. Oct. 2014 Dec. 2014 10th Jul. 2015 1st Patient Patient Innovation Patient Innovation Innovation Award version 2.0 was Award Ceremony was launched launched7th Feb. 2014 Nov. 2014 Apr. 2015Patient Innovation Patient Innovation Patientplatform (v 1.0) @ twitter Innovation @launch event wikipediaWe are currently implementing a new homepage, in order to make it more user-friendly and to simplify Patient Innovation message. We would love to have yourfeedback!Our Journey Together 23

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Partners who help us reach further Our project only achieves its full potential if we are able to attract a large number of chronic patients to the platform. For that reason, we realized it would be important to involve patient associations in our initiative. We are very happy with the positive response from patient groups, from associations of various types of diseases, and from different geographies across the five continents. We expect to have soon a portfolio of partner associations in Australia, Brazil, Malaysia, Portugal, Spain, and the UK, among others. These are the associations that already signed collaboration agreements with Patient Innovation:Association of Genetic Support of PortugalAustralasia (AGSA) Associação Portuguesa de EpidermóliseSydney, Australia BolhosaAustralian Patients Association (APA) PortugalMelbourne, Australia Diabetes UKRaríssimas - National Association of Mental UKand Rare Diseases Acts of Love - Ljubav na djeluPortugal CroatiaAssociação Alfa 1 de Portugal Liga Portuguesa Contra as DoençasPortugal ReumáticasAssociação Laço PortugalPortugal Malaysian Rare Disorders SocietyAssociação Protectora dos Diabéticos de MalaysiaPortugal (APDP) Nevada/California Diabetes AssociationPortugal USAAssociação Portuguesa Charcot-Marie- National Organization for Rare Diseases ofTooth (APCMT) Serbia (NORBS)Portugal ServiaAssociação Nacional de Espondilite Psoriasis Association of MalaysiaAnquilosante (ANEA) MalaysiaPortugal Rede PositivoAssociação Salvador PortugalPortugal Sociedade Portuguesa de EscleroseBanco de Informação de Pais para Pais Múltipla (SPEM)(BIPP) PortugalOur Journey Together 26

2nd Patient Innovation Awards The success of the 1ST Patient Innovation Awards encouraged the PI team to go for the second edition of the ceremony. The deadline to submit an innovative solution for the 2nd edition is January 15, 2016. A promotional video, featuring the previous six winners, can be watched here.Our Journey Together 27

patient- innovation.comThank you for walking alongsidePatient Innovation in our journeyOur Journey Together 28