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Can Patients Be Innovators When Managing Their Own Diseases?

Can Patients Be Innovators When Managing Their Own Diseases?

” Innovation by Patients with Rare Diseases and Chronic Needs ” is the title of the first working paper published as part of “ TEIPL: Technology, Entrepreneurship and Innovation Policy Lab,” one of the six Entrepreneurial Research Initiatives (ERI) recently awarded for funding by the CMU Portugal Program. The paper was written during the submission of the proposal and provides, according to the authors, the first empirical exploration of disease-related innovation by patients and their caregivers.
The paper was co-authored by Pedro Oliveira (Católica Lisbon School of Business and Economics, CLSBE), Leid Zejnilovic (dual degree Ph.D. student in Technology Change and Entrepreneurship at Instituto Superior Técnico of the Universidade de Lisboa, CLSBE and CMU), Helena Canhão (Faculdade de Medicina of the Universidade de Lisboa), and Eric A. Von Hippel (Massachusetts Institute of Technology).

“Our aims were to measure the frequency of innovation by these patients and their caregivers, and the improvement in well-being they experienced from using what they had developed. In addition, we explored the diffusion of their innovations to others, and factors associated with both patient innovation development, and patient innovation sharing,” the researchers explained.

In order to accomplish their goals, the team interviewed, by telephone, a sample of 500 patients with rare diseases and caregivers. One of the conclusions was that 52.6 per cent of the survey respondents reported having developed and used an innovative solution to improve the management of their diseases. Moreover, the authors concluded, “there is a positive relationship between the impact of a solution on the respondents’ overall quality of life and the probability of sharing that solution, and an inverted U relationship between age and solution sharing.” Their findings suggest that “many patients could be greatly assisted by an improved diffusion of the best known practices to and among patients and their caregivers,” the researchers explained .

The paper was written in the scope of the Entrepreneurial Research Initiative “ Technology, Entrepreneurship and Innovation Policy Lab – TEIPL ,” a new multidisciplinary organization that brings together leading academic and corporate partners to conduct research and policy analyses on the development and diffusion of entrepreneurship and innovation to unlock Portugal’s global competitiveness.

August 2014


The Phase II of the Carnegie Mellon Portugal Program emphasizes advanced education and research that can lead to significant entrepreneurial impact. The activities of the program are for the most part configured in Entrepreneurial Research Initiatives (ERIs).