If you cure cancer in your backyard, who will know? The need for a framework to evaluate and support innovations from citizen science: experience from a website for problem-solving eczema

If citizen scientists claim to cure a disease, who would believe it? Research by nonprofessional investigators — or, DPI "democratized principal investigator" citizen scientists — is an emerging area of citizen science. ... [ view full abstract ]

If citizen scientists claim to cure a disease, who would believe it?

Research by nonprofessional investigators — or, DPI "democratized principal investigator" citizen scientists — is an emerging area of citizen science. When billions of people live keystrokes away from the greatest libraries of knowledge in history, with commensurate opportunities to collaborate across boundaries, the potential for disruptive innovation by people working outside of professional research paradigms multiplies. Especially in medicine, where general scientific knowledge can be accessed easily from open-source environments, but knowledge of what it is like to experience disease is far more "sticky" — more difficult to convey from one person to another — highly motivated citizen scientists stand poised to make unique contributions to solving long-standing disease problems, especially where intense empirical observation may be key.

DPI citizen scientists face unique challenges, particularly the need for a respected framework for evaluation and validation of research equivalent to — but more nimble and appropriate to citizen science than — traditional peer review and publication. Other hurdles include finding economic support and overcoming an "ivory tower" barrier to productive open-source collaboration with professional researchers.

I will discuss lessons from my experience creating a website-based heuristic for alleviating eczema and related allergy/asthma, accessed by hundreds of thousands of unique users over the past decade. The solution is not a simple avoidance of triggers or irritants; it has led to normal, repaired skin-barrier, lung, and immune function, in a way the underlying basis suggests and without ongoing treatment. I will also discuss how the solution could satisfy traditional criteria for causality and potentially revise the “hygiene hypothesis.” I will expand on validating such findings and gaining acceptance for the radical idea that solving intractable disease problems might be possible, even uniquely amenable to citizen science.