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Ed Harris

Citizen Research - Is this part of Citizen Science?

When I read about the term "citizen science", it is usually associated with collaborative research in most cases initiated by a "Normal" (i.e., professional) researcher - basically crowd sourced research.

I represent a different "category" and am not sure where I fit in to the citizen science movement or if I do at all.  The short version is that I was diagnosed with a rare, untreatable autoimmune condition in 1990 (systemic scleroderma), started researching the disease and came up with a new disease model and treatment approach that worked, became a disease expert and educator and most recently have formed a research team consisting of major researchers to explore the disease model I proposed in 1993.  I have presented posters at two medical conferences and have one paper recently accepted for publication in a research journal.  The longer version of the story can be read here:

So in a sense, I am a reverse of the normal "citizen science" model.  I am a non-professional leading a research effort that includes a team of researchers who are working with me on this project.  My situation is certainly rare but is not unique (

So, what am I and how do I fit in?  I have started to use the term "citizen researcher" when I am inevitably asked the question "Who exactly are you and who are you affiliated with?".

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    Katrina Theisz

    I would say yes, you are a citizen scientist. Not all citizen science defines itself as scientific research that is done at an academic institution where the public is involved at some level in the research process. While many projects look like that, many others start out like yours- the public, a person, a community, noticing an issue and doing something about it through their own research, or determining the research questions to be studied by a “traditional” researcher, and working together to answer those questions with science.

    Indeed, many argue that citizen science means involvement of the public at ANY level of the scientific process. Sometimes that "public" starts with one person.

    Just like we've learned in the recent citsci discussion listserv discussion, citizen scientists go by many titles and are in many different professions. The bottom line, is they are doing science, no matter what they studied in school or what they do for a living. 

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