Joel Weinstock discusses the use of parasitic worms (helminths) as a therapy for human autoimmune disease (Nature 491, 183–185; 2012). We contend that using a pseudo-pharmaceutical process to evaluate helminth therapeutics — which typically costs millions of dollars and takes more than a decade to pass through clinical trials — is not the only way.

Individuals with chronic autoimmune disease often seek their own solutions, rather than wait for uncertain and complex approval processes or face unpleasant palliative therapies, side effects and surgery. Some UK patients with Crohn's disease, for example, are sourcing helminths, gathering data and sharing their experiences through online forums (our unpublished findings). As in the development of early therapies for AIDS, user practice is — rightly or wrongly — being driven by extreme need and is moving faster than formal scientific understanding.

A different approach to helminth therapeutics might be to allow patients to help with development, using their insight and evidence in a revised model that better reflects patient behaviour and capabilities.