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Description
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Since Schumpeter published “The Theory of Economic Development” in 1934, governments and companies have assumed that ideas for new products and services originate inside producing firms. Consumers have long been seen as passive recipients, merely buying and consuming what producers create. But times are changing. Groundbreaking research led by Eric von Hippel at MIT suggests that the traditional division of labor between innovators and customers is breaking down. Users are themselves a major source of product and service innovations. In the first survey of its kind, von Hippel and colleagues measured the development and modification of consumer products by product users. This previously unmeasured type of innovation turned out to be quite common: 6.1% of UK consumers (2.9 million individuals) had engaged in consumer product innovation during the prior three years. In total, consumers’ product development expenditures were more than 1.4 times larger than the R&D expenditures of all firms in the UK combined. In this project we empirically investigate the role of patients of chronic diseases in the development of new treatments, therapies or medical devices (TT&DM). By definition, user innovations are developed with the ultimate objective of being used. In health-care, patients are users since they expect to benefit from using the solutions they self-develop (producers typically benefit from commercializing the innovations). We also attempt to quantify the socio-economic value of those innovations. We build our study upon previous research (e.g., Oliveira and von Hippel and DeMonaco 2011; Shcherbatiuk and Oliveira 2012) that found that patients and family members display innovative capabilities and have developed a significant number of TT&DM for themselves (e.g., about 50% of TT&DM for Cystic Fibrosis were developed by the patients). Their knowledge of the disease holds important potential for the health care sector, but the main players have been hesitant to integrate them in their development cycle. For example, the low prevalence of rare diseases often leads to scarce medical knowledge and inconsistent therapy concepts. Also, because most rare diseases are not economically attractive, private R&D investments are limited. Given these circumstances, patients themselves have a strong incentive to innovate. We have organized our project in 5 tasks. In task 1 we develop a methodology to identify patient innovators in Portugal, Brazil, USA, UK, Germany and Austria. Task 2 refers to the data collection, i.e. the identification of innovative treatments/therapies/medical devices developed by patients. We focus on chronic diseases, as it is more likely that patients who suffer from a health condition or disease that is persistent and long lasting in its effects have stronger incentives to innovate. Task 3 refers to the medical validation of the merit of those patient innovations, which will be performed by medical doctors and scientists associated with the Instituto de Medicina Molecular. In the pilot phase, we will focus on a sub-set of chronic rare diseases, namely: Epidermolysis bullosa; Cornelia de Lange syndrome; Angelman syndrome; Dystrophic nanism; Cystic Fibrosis and Behçet's disease. We speculate that the pattern observed for the above mentioned diseases will be quite general. Task 4 refers to the development of a Patient-to-Patient information-sharing platform to disseminate the patients’ innovations and knowledge among the community of patients. Task 5 refers to the analysis of the economic and social impact of patient innovation. Our empirical findings have important policy and managerial implications for health care management and policy. This project will contribute to the identification, characterization and dissemination of innovations developed by patients and their families after they are medically validated. The “crowd” of patients will funnel more innovative ideas to relieve/cure the patients affected by rare diseases. Through our platform, we expect to reach an international audiences and unveil this valuable knowledge to the broader community. We will work with several rare diseases associations who will help us identify patients that have innovated. Our study contradicts the producer-centered view of health-care innovation that would assume that TT&DM innovations are developed and introduced to the field by the providers of medical services and equipments. This joint interdisciplinary project brings together two management schools (CATÓLICA-LISBON and NOVA), a medical research center (IMM), Innosabi, a provider of platforms for the co-creation of new products/services and several patient associations. Eric von Hippel (MIT) will advise the development of the project. The PI and research team have previously been involved in FCT funded projects. All projects were classified as excellent and far exceed the objectives, having resulted in publications in the top journals.
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