Probing the limits of user innovation: radical patients, intestinal parasites, and the development of Helminthic therapy

User innovation is a widespread and potent phenomenon that has been documented in a wide range of domains including scientific instruments, software and medical devices. However, the limits of user innovation remain unclear and much work (both empirical and theoretical) remains to be done to clarify the boundary of this phenomenon.

For example, the mechanisms of lead user innovation have been shown to operate effectively in many markets, but in the context of medical treatments the picture is more complex: new devices and treatments require extensive development, testing and certification, there is a strict regulatory environment and individual patients, as users, may have a very minor role in the innovation process.

Chronic disease presents a very particular circumstance in which patients develop significant expertise concerning their condition and, in the absence of effective treatment, may face a stark choice: do they wait for the official system to provide relief, or do they take action themselves?  Faced with such a choice, some individuals may choose to side-step official options and seek their own solutions, creating a parallel, entirely user-led, system of innovation in the process.

This paper documents a user-led system of innovation that has grown up around the development of a therapy to treat a chronic autoimmune disorder called Crohn’s disease. The case shows that, by drawing on mainstream scientific research, users took the lead in the innovation process to create an experimental medical treatment based on intestinal parasites for Crohn’s and other chronic autoimmune diseases. The paper explores the characteristics of lead users in such contexts and examines how a combination of a powerful need, dissatisfaction with medical treatments and strong regulatory regime can drive the emergence of such outlaw innovations. The paper also examines the directionality of knowledge spillovers and the factors that determine the nature of the time lag between lead user activity and its incorporation in mainstream practice, introducing the concept of the lead user lag. The paper concludes with directions for future research in this area.