Public Lab Research note

Where We Breathe Website Walkthrough

by nshapiro | August 24, 2015 04:48 | 1,576 views | 5 comments | #12163 | 1,576 views | 5 comments | #12163 24 Aug 04:48

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Where We Breathe

For the past year-and-a-half @warren Nicole Novak @mmmelissa @shannon @becki and I have been working on developing a web platform that will serve as a meeting point for people quietly enduring chronic formaldehyde (HCHO) exposure. Currently the website is only for manufactured homes, which have higher levels of HCHO than conventional homes, but hopefully soon the project will be expanded to all homes. It is a site where people can, together, leverage their own bodies as evidence of the ongoing harms of HCHO exposure (see a paper we just published on this) through an epidemiologically validated survey and work together to analyze the data and share their stories in non-quantified ways. Where We Breathe is a place where community science, digital storytelling and community organizing meet.

We have been largely working on github to get a basic version of the site up, but we are reaching a point where its ready to share with the Public Lab community. Below I've embedded a walkthrough of the website so far. We're extremely proud of the work we've done so far, attempting to reconcile both the needs of valid data collection and community self-determination of research questions, but we still have a lot of work to do.

Let us know what you think!

5 Minute Walkthrough (edit by @mathew)

10 Minute Walkthrough


+0:00 Introduction

+0:50 Signing up

+2:25 Logging in

+2:32 Intro tour

+3:27 Starting the questionnaire

+4:07 Starting the forum

+5:30 Symptoms Survey

+5:44 Simulate filling out symptoms survey

+7:40 Symptoms forum

+9:41 Returning to the dashboard

Live address will be:

In the meantime you can see more info about Where We Breathe here:

Contribute on github:

Learn more about our test kit in this post by @mathew:

Learn more about the experimental formaldehyde remediation kit here:


If this is largely done through self reporting and the information is coming from a group that expects such toxins to be present, I have two very serious psychological/sociological concerns:

Expectation bias or experimenter's bias. " In what is called the observer-expectancy effect, the experimenter may subtly communicate their expectations for the outcome of the study to the participants, causing them to alter their behavior to conform to those expectations. Such observer bias effects are near-universal in human data interpretation under expectation and in the presence of imperfect cultural and methodological norms that promote or enforce objectivity."

Mass hysteria. "In medicine the term is used to describe the spontaneous manifestation of the same or similar hysterical physical symptoms by more than one person. A common manifestation of mass hysteria occurs when a group of people believe they are suffering from a similar disease or ailment, sometimes referred to as mass psychogenic illness or epidemic hysteria."

I am very concerned that you might get exactly the results you want because you setup to suggest that you want certain results in the first place. Worse yet, if people buy into that expectation strongly enough, and since we are dealing with a health issue, they could begin to manifest symptoms that aren't inherently formed from a physical basis.

Are any steps being taken to consider or address issues like these?

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Hi @btbonval! Thanks for your comment and concern. We have thought a lot about these issues. We are planning to do some randomized monitoring+surveying to compare to (and asses bias) and we will also have stipended community members facilitating online exchange so we are not so worried about things getting too out of hand. I just sent your comment to Nicole, the epidemiologist on the team, who can provide a longer and more precise response. We won't be able to control for all bias, but we are working to make the data as robust as possible without compromising our grassroots ethos. Also, and i keep having to remind myself of this, the data is just half the story.

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@nshapiro glad to hear it has been considered! I studied some psychology in college, I learned that if there's anyone who knows how to craft a survey, it's an academic psychologist. There will be unavoidable effects, of course, but as long as you've got someone on the team (or at least consulted with someone) who knows how to deal with that sort of stuff, I'm pacified :)

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Nick, I re-cut your video to 5 minutes as a quicker walkthrough-- what do you think?

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Great! Thanks for that! Next time just tell me to do that :) I've uploaded it to youtube and embedded it in the note!

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