Patient-innovation.com

Patient-innovation.com
Web address www.patient-innovation.com/
Slogan Sharing solutions, improving life
Type of site
 Database
Registration Optional
Available in Multilingual
Owner Catolica-Lisbon School of Business and Economics
Created by Pedro Oliveira
Launched 7 February 2014
Revenue Non-profit
Current status Active

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 Catolica-Lisbon School of Business and 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] Prof. Eric von Hippel, Nobel Laureate Prof. Aaron Ciechanover, Prof. Katherine Strandburg, Prof. Robert Langer, and Prof. Lee Fleming - who serve on the Advisory Board. Epi Ludvik Nekaj writes about Patient Innovation at Virgin.com: "Patient Innovation is an impressive platform that helps patents drive innovation to find treatment options for their health problems."[8]

Administration

Patient-innovation is institutionally located at Catolica-Lisbon School of Business and 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 Patient-innovation site. Only the validated solutions are posted on the platform.

Patient Innovation Awards

Patient Innovation promotes annualy the Patient Innovation Awards with the objective of recognizing 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 announce in February 2015 and 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. [9]

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.[10][11]

References

  1. ↑ von Hippel, E., “The sources of innovation”, Oxford University Press, New York, 1988.
  2. ↑ http://www.ojrd.com/content/10/1/41
  3. ↑ http://www.fct.pt
  4. ↑ http://www.cmuportugal.org/tiercontent.aspx?id=5070
  5. ↑ http://clicresearch.org/peter-pribilla-stiftung/?projekte=visualizing-user-innovation-in-health-care
  6. ↑ http://www.funginstitute.berkeley.edu/research-crowdsourced-medical-innovation-be-launched-27
  7. ↑ http://www.huffingtonpost.com/vanessa-kuhlor/a-social-side-of-science-_b_6207332.html
  8. ↑ http://www.virgin.com/entrepreneur/forget-the-sharing-economy-its-time-for-the-crowd-economy
  9. ↑ http://us3.campaign-archive2.com/?u=7ed42017b5a721b88e1910afb&id=3ed232c283
  10. ↑ 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) (http://www.ojrd.com/content/10/1/41)
  11. ↑ 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