Dear colleague,

The next research seminar, which you are invited to attend, will take place on 27th of February, 11h30, Américo Amorim Building (Room 3), and will be presented by Pedro Oliveira (Católica-Lisbon School of Business and Economics), on the topic “Patient Innovation under Chronic Need: A Pilot Investigation and a Planned Intervention”.

Patient Innovation under Chronic Need: A Pilot Investigation and a Planned Intervention

Pedro Oliveira (a), Leid Zejnilovic (a), Helena Canhão (b), Eric von Hippel (c)
(a) Católica-Lisbon School of Business and Economics
(b) University of Lisbon School of Medicine
(c) MIT Sloan School of Management


Patients afflicted by rare diseases – there are about 7000 diseases in this category - are in “orphan” markets. They can expect little help from producers in the form of specialized products to help them cope with their diseases. As many of these rare diseases are chronic and degenerative, there are strong incentives for patients and their caregivers to develop solutions – or to discover and adopt solutions developed by peers - to help them cope with their diseases and improve their daily lives. We measure health related innovation activity levels and sharing of information about solutions developed by patients of rare and chronic diseases and their non-professional caregivers. In a sample of 500 rare disease patients and their caregivers, we find that 9.2% (46) report developing and using innovations 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 afflicted by rare diseases, patient and their caregivers who innovate to solve their own needs and improve their personal conditions may be a tremendous potential resource of information to improve management and care for many who are similarly afflicted. Currently, diffusion of innovation-related information by patient innovators appears to be relatively low – and it has been proposed that a market failure negatively affects diffusion of user innovations in general. To attempt to explore and address this possible problem further, we have set up a website ( to support diffusion of patient innovations, and to serve as an experimental platform to test the efficacy of a variety of interventions to improve diffusion.

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Please confirm your attendance until February 26th by e-mailing Mara Carvalho (

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