Patient innovation

: its prevalence, antecedents and impact

Abstract

In order to maintain the level of healthcare that we now associate with developed countries, innovation is imperative. Previous literature has shown that patients of chronic diseases are often involved in the development of new treatments and medical devices to help them cope with their health-condition. However the innovation developed by patients is often ignored or even rejected. A possible approach to address this issue is to open up healthcare innovation, by allowing patients and their caregivers to become themselves active contributors to the innovation process. In this context, the aim of this dissertation is to (1) quantify the extent to which patients and caregivers of rare diseases innovate, (2) find demographic and non-demographic antecedents of patient innovation, and (3) assess how the innovations impact the lives of patients. A telephone survey was conducted with the main objective of measuring the extent to which respondents had innovated, or not. 496 patients and caregivers of 250 rare diseases responded to the survey. Following the data collection we performed a descriptive analysis of the data and a multiple logistic regression to identify statistically relevant predictor variables of patient innovators. We found that 13% of respondents had innovated, and the variables that emerged as predictors of being an innovator are: higher level of education, being unemployed or looking after at home, being aware of the expenses with the disease, and Information and Communication Technology readiness. On the other side, being single has a negative impact on the propensity to innovate when compared with being married. Moreover, in a 7-point Likert scale measuring the quality of life of the patient, the innovations led to an average improvement of 2.4 points. Not only are patients developing completely new-to-the-market innovations, that are improving the patients’ quality of life, but they also assume the risks of trying solutions that had not yet been tested. This study suggests that the current producer-based and paternalistic healthcare model should be revised, so patients are given the chance of playing a more proactive role.

Date of Award	2013
Original language	English
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Pedro Oliveira (Supervisor) & Leid Zejnilovic (Co-Supervisor)