Patient Innovation
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Patient Innovation is a website that shares solutions and ideas developed by patients and informal caregivers for managing personal health issues. It is a non-profit and also provides rating tools and options to report and track modified solutions that these individuals develop.


History

Patient Innovation started as an academic research project aimed to study
user innovation __NOTOC__ User innovation refers to innovation by intermediate users (e.g. user firms) or consumer users (individual end-users or user communities), rather than by suppliers (producers or manufacturers). This is a concept closely aligned to co-des ...
by patients and their non-professional caregivers, funded by The Portuguese Science and Technology Foundation (FCT), Carnegie-Mellon Portugal Program and Pieter Pribila Foundation. The project was founded by two Portuguese academics and researchers Pedro Oliveira and Helena Canhão. As one of the project's outcomes, the online platform was launched on February 7, 2014, at an inaugural event in Lisbon, Portugal. The project is supported by a number of distinguished individuals, including Nobel Laureate Sir Richard J. Roberts,
Eric von Hippel Eric von Hippel (born August 27, 1941) is an American economist and a professor at the MIT Sloan School of Management, specializing in the nature and economics of distributed and open innovation. He is best known for his work in developing the ...
, Nobel Laureate
Aaron Ciechanover Aaron Ciechanover ( ; he, אהרן צ'חנובר; born October 1, 1947) is an Israeli biologist who won the Nobel Prize in Chemistry for characterizing the method that cells use to degrade and recycle proteins using ubiquitin. Biography Early ...
, Katherine Strandburg,
Robert Langer Robert Samuel Langer Jr. FREng (born August 29, 1948) is an American chemical engineer, scientist, entrepreneur, inventor and one of the twelve Institute Professors at the Massachusetts Institute of Technology. He was formerly the Germeshau ...
, Lee Fleming and Keld Laursen – who serve on the Advisory Board.


Administration

Patient Innovation is led by Prof. Pedro Oliveira from Copenhagen Business School and Prof. Helena Canhão from the FCM - NOVA Medical School. The project team includes medical doctors from FCM - NOVA Medical School. Patient Innovation terms of use include the agreement that users do not include the content that promote "self-mutilation, eating disorders or hard drug abuse". To enforce the terms of service, all the submitted solutions go through a screening by the project's medical team, who check whether for submission complies with the terms and services advertised on the Patient Innovation site. Only the validated solutions are posted on the platform. In 36 months, over 850 solutions developed by patients, (non-professional) caregivers or collaborators from over 60 countries were submitted, curated and shared to improve the lives of many other who struggle with different health conditions.


Awards and Main Achievements

* In 2018 Patient Innovation was the winner of the Santa Casa Challenge, promoted by Santa Casa da Misericórdia de Lisboa, in the Social Action/Health category; the Fidelidade Comunidade Award; and the World Summit Awards in the category of Health and Well-Being. * In April 2017 Católica Lisbon was one of four European business schools recognized by AACSB as Entrepreneurship Spotlight Challenge Honoree specifically for the work of Patient Innovation * In December 2016 Patient Innovation won the Healthcare Startup Awards and was named "Non-Profit Startup of The Year” by the HealthCare Startup Society. * Patient Innovation was one of 5 projects featured at the "Summit on Science and Technology Enablement for the
Sustainable Development Goals The Sustainable Development Goals (SDGs) or Global Goals are a collection of 17 interlinked objectives designed to serve as a "shared blueprint for peace and prosperity for people and the planet, now and into the future".United Nations (2017) R ...
" (November 29, 2016) as an example of "Commitments to Collective Action". This was because "Patient Innovation is already contributing to two of the UN's Sustainable Development Goals: #3- Good health and Well-Being & 9-
Industry, Innovation and Infrastructure Sustainable Development Goal 9 (Goal 9 or SDG 9) is about "industry, innovation and infrastructure" and is one of the 17 Sustainable Development Goals adopted by the United Nations General Assembly in 2015. SDG 9 aims to build resilient infrastruc ...
." Secretary General Ban Ki-moon (United Nations) opened the Summit. * The London Science Museum has selected this project as one of seven case studies to be featured in the exhibition 'Beyond the Lab: The DIY Science Revolution' which opened July 7, 2016 and will visit 29 European countries until the end of 2018. * In February 2016, Patient Innovation was one of eleven innovations from all over the world distinguished by the office of Prime Minister of the
United Arab Emirates The United Arab Emirates (UAE; ar, اَلْإِمَارَات الْعَرَبِيَة الْمُتَحِدَة ), or simply the Emirates ( ar, الِْإمَارَات ), is a country in Western Asia (The Middle East). It is located at th ...
(UAE) to be featured at the 4th World Government Summit, in
Dubai Dubai (, ; ar, دبي, translit=Dubayy, , ) is the most populous city in the United Arab Emirates (UAE) and the capital of the Emirate of Dubai, the most populated of the 7 emirates of the United Arab Emirates.The Government and Politics of ...
(February 8–10, 2016). The World Government Summit was a global event that gathered more than 3000 attendees from over 90 countries. Patient Innovation had a prominent presence in the summit, where a number of solutions were on display. * In December 2014, Jornal i, a Portuguese newspaper, named the founder of Patient Innovation as "one of the 14 Portuguese citizens who contributed to change the world for the better" 10] due his work on the Patient Innovation Project. * European Commissionner Carlos Moedas remarks about Patient Innovation: "I think what you've achieved is nothing less than astonishing! The simplest innovations are the game-changers. And game-changing innovation doesn't always come easily to a sacred profession like medicine. Not many people are willing to put in the effort it takes to prove something can be done differently. Particularly, when the world around you seems to think that 'the way it's always been done' is probably good enough. So I congratulate you − I respect you immensely − for being the pro-wrestlers of change! The heavy-weights of patient innovation! I can't wait to see what the future has in store for this project and its impacts on citizens!"


Patient Innovation Awards

Patient Innovation promotes the annual Patient Innovation Awards for patients, caregivers and collaborators who have developed innovative solutions to cope with the challenges of their health condition, to assist others they care about, or in some cases, to help people they don't even know. The winners of the 1st Patient Innovation Award were announced in February 2015. They are: *Category "patients": Lisa Crites (USA) with the Shower Shirt, Louis Plante (Canada) with the Frequencer and Tal Golesworthy (United Kingdom) with the Aortic Root Support. *Category "caregivers": Debby Elnatan (Israel) with Upsee and Joaquina Teixeira (Portugal) with the helium balloons. *Category "collaborators": Ivan Owen (USA) and how he has helped so many patients get a 3D-printed prosthetic hand. The 1st Patient Innovation Award Ceremony was held in Lisbon on July 13, 2015 at the
Calouste Gulbenkian Foundation The Calouste Gulbenkian Foundation ( pt, Fundação Calouste Gulbenkian), commonly referred to simply as the Gulbenkian Foundation, is a Portuguese institution dedicated to the promotion of the arts, philanthropy, science, and education. One o ...
. European Commissioner
Carlos Moedas Carlos Manuel Félix Moedas (born 10 August 1970) is a Portuguese civil engineer, economist and politician of the Social Democratic Party (PSD). From 2014 until 2019, Moedas served as European Commissioner covering the portfolio of Research, S ...
was one of the distinguished guests. The winners of the 2nd Patient Innovation Award were announced in February 2016. The 2nd Patient Innovation Award Ceremony was held in November 2016 during the WebSummit. They are: *Category "patients": Michael Seres (UK), Giesbert Nijhuis (The Netherlands) *Category "caregivers": David Day (UK, Doron Somer (Israel), Kenneth Shinozuka (US) *Category "collaborators": Pavel Kurbtasky (Russia), Duncan Fitzsimmons (UK) The winners of the 3rd Patient Innovation Award were announced in November 2017 at the Calouste Gulbenkian Foundation. They are: *Category “Caregivers”: Lise Pape (Denmark) for Path Finder & Bodo Hoenen (USA) for Robotic Arm Brace *Category “Patients”: Rita Basile (France) for Handiplat *Category “Developing Country Innovator”: Gérard Niyondiko (Burkina Faso) for Faso Soap *Category “Patient Innovation Lifetime Achievement Award”:
Robin Cavendish Robin Francis Cavendish, MBE (12 March 1930 – 8 August 1994), was a British advocate for disabled people, medical aid developer, and one of the longest-lived ''responauts'' in Britain. Born in Middleton, Derbyshire, Cavendish was affected b ...
(1930 - 1994) and Diana Cavendish, for developing a variety of innovations for polio patients (including a wheelchair with an attached ventilator) and for tirelessly advocating for people with disabilities.


Research

The team conducts research on the role of patients of
chronic diseases A chronic condition is a health condition or disease that is persistent or otherwise long-lasting in its effects or a disease that comes with time. The term ''chronic'' is often applied when the course of the disease lasts for more than three mo ...
, and their caregivers, in creating new solutions to help them cope with their health conditions. Recently they administered a survey over phone to 500
rare disease A rare disease is any disease that affects a small percentage of the population. In some parts of the world, an orphan disease is a rare disease whose rarity means there is a lack of a market large enough to gain support and resources for discove ...
patients/caregivers with the following objectives: to measure frequency of patient innovation in a population of rare diseases patients; to measure efforts by patients to share their solutions with others; to explore which factors drive patients to come-up with solutions and share them with others. The solutions reported by patients were validated for their novelty by two medical professionals. 40 individuals (8% of sample) reported solutions that they personally find valuable, and that are also evaluated as novel by expert medical evaluators. If anything like this fraction of innovators holds for the overall population of hundreds of millions of people worldwide estimated to be afflicted by rare diseases, patients and their caregivers may be a tremendous potential resource to improve management and care for many who are similarly afflicted.Zejnilovic, L., P. Oliveira, H. Canhão (Forthcoming), "Innovations by and for the patients: and how can we integrate them into the future health care system" in Boundaryless Hospital (edited book) by Springer


References


External links

* * *{{cite web, url=http://www.virgin.com/entrepreneur/forget-the-sharing-economy-its-time-for-the-crowd-economy , title=Forget the sharing economy, it's time for the crowd economy , author=Epi Ludvik Nekaj, date=2 October 2014 , publisher=Virgin, accessdate=2015-07-11 Medical research organizations Patient