Patient Innovation

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 ^[1] by patients and their non-professional caregivers,^[2] funded by The Portuguese Science and Technology Foundation (FCT),^[3] Carnegie-Mellon Portugal Program^[4] and Pieter Pribila Foundation.^[5] 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.^[6] The project is supported by a number of distinguished individuals, including Nobel Laureate Sir Richard J. Roberts,^[7] 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 produce "Self-Harm: We remove any promotion or encouragement of 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 24 months, over 500 solutions developed by patients, (non-professional) caregivers or collaborators from over 30 countries were submitted, curated and shared to improve the lives of many other who struggle with different health conditions.

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 – 10 2016).^[8] 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 openned July 7, 2016 and will visit 29 european countries until the end of 2018.^[9]

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.^[10]

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.^[11]

The winners of the 2nd Patient Innovation Award were announced in February 2016. They are:^[12]

• 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.^[13][14]

References

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.