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SUMMARY:Seminar by Prof. Pedro Oliveira\, Católica Lisbon School of Busin
 ess & Economics
DTSTART:20160427T120000
DTEND:20160427T133000
DTSTAMP:20260427T230526Z
UID:ae78a103f272ee84043a37c43360056e1a472a6aa09a1084a7ea94d2
CATEGORIES:Conferences - Seminars
DESCRIPTION:Prof. Pedro Oliveira\, Católica Lisbon School of Business & E
 conomics\n"Innovation by Patients with Rare Diseases and Chronic Needs"Abs
 tract:    \nWe provide the first empirical exploration of disease-rela
 ted innovation by patients and their caregivers. Our aims were to measure 
 the frequency of innovation by these patients and their caregivers\, and t
 he improvement in well-being they experienced from using what they have de
 veloped. In addition\, we explored the diffusion of their innovations to o
 thers\, and factors associated with both patient innovation development\, 
 and patient innovation sharing.\nWe administered a questionnaire via telep
 hone interviewing to a sample of 500 rare disease patients and caregivers.
  Subjects were selected from a list of individuals who contacted the helpl
 ine of a major patient association serving rare diseases patients from 200
 9 to 2012. The solutions reported by individuals who agreed to participate
  were validated for their novelty by two medical professionals. Logistic r
 egression models were used to test the relationships between our key varia
 bles and patient innovation and solution sharing.\n263 (52.6%) of our surv
 ey respondents reported developing and using a solution to improve managem
 ent of their diseases which they thought to be novel. Of these\, 40 (8%) w
 ere evaluated as indeed being novel by two expert medical evaluators. The 
 remaining 44.6% were already known to medicine\, although thought novel by
  the patients who recreated them. The likelihood of patient innovation inc
 reased as education level increased (OR 2.1\, p<0.05)\, and as their perce
 ption of limitations imposed by their disease increased (OR 1.3\, p<0.05).
  84 individuals diffused their solutions to some degree\, with 74 of these
  sharing via direct diffusion to other patients. There is a positive relat
 ionship between the impact of a solution on the respondents’ overall qua
 lity of life\, and likelihood of solution sharing\, and an inverted U rela
 tionship between age and solution sharing.\nGiven that there are hundreds 
 of millions of people world-wide estimated to be afflicted by rare disease
 s\, patient and their caregivers may be a tremendous potential source of i
 nnovations and information to improve management and care for many who are
  similarly afflicted. Our findings suggest that many patients could be gre
 atly assisted by improved diffusion of known best practices to and among p
 atients and their caregivers.Authors:\nPedro Oliveira (1)\, Leid Zejnilovi
 c (1)\, Helena Canhão (2) and Eric A. Von Hippel (3)\n(1) Católica Lisbo
 n School of Business and Economics\n(2) University of Lisbon\, School of M
 edicine\n(3) Massachusetts Institute of Technology - Sloan School of Manag
 ementKeywords: user innovation\, patient innovation\, rare diseases\, diff
 usion
LOCATION:EPFL\, ODY 4.03\, VIP Room http://plan.epfl.ch/?zoom=19&recenter_
 y=5863800.12869&recenter_x=731560.22521&layerNodes=fonds\,batiments\,label
 s\,information\,parkings_publics\,arrets_metro\,transports_publics&floor=4
 &q=ODY_4.03
STATUS:CONFIRMED
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