User Innovators : When Patients Set Out to Help Themselves and End Up Helping Many

We investigate the motives and activities of individual user innovators in healthcare, focusing on patients of various diseases. More specifically we investigate the role of patients in the development of new treatments, therapies or medical devices (TT&MD). Whereas producers typically benefit from commercializing innovations, user innovations are, by definition, developed by those who intend to use them. In health care, patients are one possible group of user innovators since they expect to benefit from using the solutions they self-develop. We draw upon and complement previous work of Shcherbatiuk and Oliveira (2012), Oliveira, von Hippel and DeMonaco (2011) and Oliveira (2012) that found that patients and family members display innovative capabilities and have developed a significant number of TT&MD for themselves (e.g. about 50% of TT&MD for Cystic Fibrosis were developed by the patients). The knowledge of affected people about the disease holds important potential for the health care sector, but the main players have – for several reasons – been hesitant to integrate them into their development processes. Given these circumstances, patients themselves have a strong incentive to innovate. We draw on path creation theory (Garud and Karnøe 2001) for analyzing a number of new therapies and medical devices developed by patients (i.e. user innovators), including the case of electronic trousers that help paraplegics to stand and walk; the injection port, a medical device for diabetes patients who need daily injections, and the shower shirt, to protect mastectomy patients from post-surgical infection, among other. We identify three particular mechanisms (i.e., rare conditions, strong constraints on daily life, and dead end situations) that systematically produce inappropriateness in health care provision as perceived by the patient. Furthermore, we identify four individual innovation strategies that patients used to transform their needs into innovations. Last, we show that by changing their role once – from patient to patient-innovator – individuals were able to help themselves, and by changing it again – from patient-innovators to producers of medical devices – they succeeded in helping many others and in finding a way to add their valuable contribution to the existing health care system