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Patient Innovation

Type of site	Open database of innovations developed by patients and caregivers
Available in	Multilingual
Owner	Católica Lisbon School of Business & Economics
Created by	Pedro Oliveira
Revenue	Non-profit
URL	patient-innovation.com
Registration	Optional

Patient Innovation is an online platform dedicated to the sharing of solutions developed by individuals afflicted with a health disorder, as well as by their caregivers. The website 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 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 Prof. Pedro Oliveira from Católica Lisbon School of Business & Economics.

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, Nobel Laureate Aaron Ciechanover, Katherine Strandburg, Robert Langer, and Lee Fleming – who serve on the Advisory Board.

Administration

Patient Innovation is institutionally located at Católica Lisbon School of Business & Economics, and is led by Prof. Pedro Oliveira (Catolica-Lisbon) and Prof. Helena Canhão from the University of Lisbon School of Medicine. The project team includes medical doctors from University of Lisbon School of Medicine.

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 650 solutions developed by patients, (non-professional) caregivers or collaborators from over 50 countries were submitted, curated and shared to improve the lives of many other who struggle with different health conditions.

Main achievements

• 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!"

• In December 2014, by 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" due his work on the Patient Innovation Project.

• 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 (UAE) to be featured at the 4th World Government Summit, in Dubai (February 8 – February 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.

• 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.

• Patient Innovation was one of 5 projects featured at the "Summit on Science and Technology Enablement for the Sustainable Development Goals" (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." Secretary General Ban Ki-moon (United Nations) opened the Summit.

• In December 2016 Patient Innovation won the Healthcare Startup Awards and was named "Non-Profit Startup of The Year” by he HealthCare Startup Society.

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. European Commissioner Carlos Moedas was one of the distinguished guests.

The winners of the 2nd Patient Innovation Award were announced in February 2016. 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)

Research

The team conducts research on the role of patients of chronic diseases, 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 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 world-wide 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.

References

1. Eric von Hippel. "The sources of innovation", Oxford University Press, New York, 1988.
2. "Orphanet Journal of Rare Diseases | Full text | Innovation by patients with rare diseases and chronic needs". Ojrd.com. Retrieved 2015-07-11.
3. "FCT - Fundação para a Ciência e a Tecnologia" (in Portuguese). Fct.pt. 2015-05-27. Retrieved 2015-07-11.
4. "The Patient Innovation Launch Event". Cmuportugal.org. 2014-02-07. Retrieved 2015-07-11.
5. "Visualizing User Innovation in Health Care | Peter Pribilla-Stiftung". Clicresearch.org. Retrieved 2015-07-11.
6. "[Research] Crowdsourced Medical Innovation to be Launched on 2/7 | Coleman Fung Institute for Engineering Leadership". Funginstitute.berkeley.edu. Retrieved 2015-07-11.
7. 01/08/2015 2:54 pm EST. "A Social Side of Science With Rich Roberts | Vanessa Kuhlor". Huffingtonpost.com. Retrieved 2015-07-11.{{cite web}}: CS1 maint: numeric names: authors list (link)
8. EDGE OF GOVERNMENT, World Government Summit 2016 site
9. "Beyond the lab - Patient Innovation".
10. "Summit on Science and Technology Enablement for the Sustainable Development Goals - The New York Academy of Sciences".
11. 1.2.7. "HS Awards 2016 Shortlisted Startups and Categories". {{cite web}}: |last= has numeric name (help)
12. http://www.medgadget.com/2016/12/healthcare-startup-society-conference-awards-ceremony-london.html
13. Portugal. "Announcement of the Winners of the 1st Patient Innovation Awards". Us3.campaign-archive2.com. Retrieved 2015-07-11.
14. HEMMATI, Laura (13 July 2015). "Sharing Solutions, Improving Life through Citizen Innovation - European Commission - European Commission".
15. "2nd Patient Innovation Awards — Winners Annoucement".
16. Oliveira, P., Zejnilovic, L., Canhão, H. and von Hippel, E. (2015) "Patient innovation under rare diseases and chronic needs". Orphanet Journal of Rare Diseases 2015, 10 (41)
17. 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

External links

• Official website
• Vanessa Kuhlor (8 January 2015). "A Social Side of Science With Rich Roberts". Huffington Post. Retrieved 2015-07-11.
• Epi Ludvik Nekaj (2 October 2014). "Forget the sharing economy, it's time for the crowd economy". Virgin. Retrieved 2015-07-11.

• Medical research organizations
• Patient