Here, we're collecting draft text for the WhereWeBreathe.org website (being planned on Github: https://github.com/publiclab/wherewebreathe/issues/)
New Front Page issue #86
See comments in issue #15 for basis. See google doc for full formatting not available here :https://docs.google.com/document/d/1FFYqxCAAe3LXVZxoUh-wa7knyARTOPFc7p1Sa0eb2w4/edit?usp=sharing
--Lead line above the photo to state the problem: "Do you live in a manufactured home? Studies show that manufactured housing have elevated levels of formaldehyde| Learn More>>" --Research question and identity clarification: "Where We Breathe is website where manufactured home residents can work with our research team towards answering the question: How does formaldehyde exposure affect the residents of manufactured homes?" --Followed by same "Join Where We Breathe" button --In text box below photo: Use this site to share stories and data about indoor air quality health issues and read others' stories. Where We Breath has two interconnected halves.
The Study (Column one)
In the Study you can document your health in our epidemiologically validated survey. Answering questions about your environmental health can help you better understand the changes to you and your family’s bodies after moving into manufactured housing in addition to enhancing collective knowledge about formaldehyde exposure. We are developing formaldehyde testing and remediation technologies which we plan to make available for free to study participants.
The Forum (Column two)
In the Forum you can choose to share your story with other manufactured housing residents only, with the research team only, or both the community and the researchers. You will be able to read the stories shared by other community members connect with people that are facing similar problems and exchange inventive techniques for stemming the impact of formaldehyde. All data from the study will be made available in real time, in a thoroughly anonymized graphic form, for discussion and analysis by the community.
It is safest if you don’t share your real name, address, or contact information. We encourage you to create a false name and be careful of the potentially identifying information you decide to share.
We work hard to keep your data secure, and don't need to know who you are.
--In footer: "Sharing your story towards a better public understanding of indoor air quality health issues. This is a Project of Public Lab; this website is open source software."
Two Choices Page Issue #84
As Mentioned on the front page, Where We Breathe (WWB) has two interconnected spaces: the Study and the Forum.
You can participate in just the study, just the Forum, or even better, contribute to both!
Contribute to the Study
Answering simple questions about your home and health will help our research team better understand the long-term health effects of the indoor air quality in manufactured housing. Filling out this online survey isn’t the most exhilarating thing in the world but it can help improve the world’s knowledge about the health effects of chemical exposures and graphs based on anonymized data from these surveys will enrich the discussions in the Forum.
Sharing health information online can feel risky so we want to be clear about who we are, the privacy and security measures we have taken and what participation entails.
This research study is a Project of Public Lab, a grassroots environmental monitoring community and registered 501(c)(3) non-profit organization, and is led by Dr. Nick Shapiro a Fellow at Public Lab. Click here to learn more about our team. The goals of the study are to: (1) document the health impacts of residing in manufactured housing, and (2) to investigate if the onset of exposure related symptoms can be an accurate indicator of the atmospheric concentration of toxic gasses.
Responding to the survey questions takes 40 minutes on average. You can pause and pick back up where you left off at anytime.
Your responses to the questions in the the Study will only be accessible in raw form by the research team.
Participation in the study is completely voluntary. You may quit at any time.
In the case of discomfort due to certain questions, several steps have been taken to prevent any disclosure of the identity of the participants: All information is confidential. Study data will be stored on an encrypting server and access to the machine will be closely controlled. Data will then be transferred to a HIPAA-compliant secure cloud data storage and analyzed in a secure computing environment. Click here for more details on sensitive data protection measures. (see data protection plan below) All participants have assigned themselves an alias, which will be used to identify them throughout the course of study. Your email address is the most identifying piece of information that we will collect. We will never share your email address, and your email address will remain encrypted even to our research team unless you check here indicating that you are willing to be contacted directly by lead researcher Dr. Nick Shapiro. (box)
Anonymized survey data can be published by the WWB research team in academic journals and in a white papers that will be made available for free on this website.
For every section of the survey you complete you will “un-lock” the corresponding Forum. Access to the Forum comes after the Study to prevent participant responses from being skewed by others’ experiences.
Once in the Forum you will be able to select who you want to share your Forum entries with. You will be able to select Community Only, which will only be visible to other participants and not visible to researchers, Only Researchers which will only be visible to the research team, or Community and Researchers. This if for Forum entries only. Your Study data will never be shared in raw form outside of the research team.
At any time you can download all of your contributions to WWB in a single document by clicking the "download my data" button on the privacy page.
If, for whatever reason, you decide that you would like to close your account you may do so at any time by clicking the "close my account" button on the privacy page. This will not only pull your publicly shared information from the website but it will also remove your answers from aggregate representations like graphs. It will not delete researcher copies.
((((normally there would be a line that says “I have had the chance to ask questions about this research and consent form, and any questions have been answered.” but should we just avoid that altogether or have them be able to email me--which i’m hesitant about)))))
I have read the above form and, with the understanding that I can withdraw at any time and for whatever reason, I consent to participate in this research project. (check box)
You can download a PDF of this consent form for your own reference (the pdf should be populated with their user name and the date).
Click here to start the study! (in a big button)
Go straight to the Forum
No thanks, I’d rather not contribute information to the Study.
I understand that this decision to go straight to the Forum is not reversible and I will never be able to participate in the Study and that I will not be eligible for free formaldehyde testing and remediation when they become available (although I can buy or build my own testing or remediation kit as outlined on the Public Lab website). (check box)
Link here to the forums page
On a separate page (linked from above)
PLAN FOR SENSITIVE DATA PROTECTION
The Investigators (Nick Shapiro and Nicole Novak), hearafter “Authorized Users,” will work with the data. All have undergone certified IRB training and have been made fully aware of the sensitive nature of these data.
DESCRIPTION OF SERVER SECURITY
Techies can fill this in later once we know. encrypting the disk and closely controlling access to the machine.
How will the data move from the server to nicoles hipaa certified cloud storage?
Novak (University of Michigan) has access to HIPAA-compliant secure cloud data storage. This secure file storage and collaboration system can be used to store protected health information (PHI) and can safely protect the data of our participants.
DESCRIPTION OF THE COMPUTING ENVIRONMENT
Data will be analyzed on a computer at (xxxxxx). The computer requires a login with a unique user ID and password for each user. A password protected screensaver is in use when logged in (on 5 minute timer). As an added precaution, the BIOS is password protected so that an intruder cannot get access to the PC via a boot disk.
The work area for the project, including the raw data file, is encrypted with Windows encrypting software.
The statistical package in use points its temporary work area to this encrypted area rather than the factory defaults.
This operating system of the computer is kept patched with relevant updates. Anti-virus software is in use.
DATA ACCESS AND DATA STORAGE
The data and work files are stored on the PC hard drive. The hard disk is not backed up. The user will back up programs (programming code/syntax only) on a networked drive in case of disk failure. No restricted data or derived data will be stored on a networked drive. At the conclusion of the project, the data and work areas on the hard drive will be erased with ‘secure erase’ software.
No paper copies of sensitive printouts will be made. Published results will be limited to descriptive statistics and/or statistical models.
All analyses will be at the aggregate level. All authorized researchers agree that they will under no circumstances describe or present individual cases publically; list, describe or identify location or locations by number, by name, or by descriptive information; create maps with any features that allow locations to be identified; and summarize statistics that have cell sizes under 11 observations.
You are about to enter the Forums where you can tell you story in full, see live graphs of survey data and connects with other people facing similar issues as you.
You have 3 options for who can see what you post in the forums. Please take a chance to select one. You can change your selection at any time, which will change the accessibility of your posts from that moment forward.
Community members and the research team can see your posts.
Community members and not the research team* can see your posts.
The research team and not the community members can see your posts.
*The system administrator will be able to see content that has been deemed inappropriate by community facilitators (learn more about community facilitators here (link)).
[If they select an option with community members in it--this pops up: Please only share what you would feel comfortable sharing in a public but anonymous way, only the research team is bound to strict levels of confidentiality]
There's no reason to share your real name, address, or contact information. Share your data under a false name and be careful of the potentially identifying information you decide to share.
We work hard to keep your data secure, and don't need to know who you are…
Know who's reading
You can decide to share privately with our team of epidemiologists and social scientists, and the information you supply will only be used for scholarly purposes and in a non-identifying manner.
If you choose to make your data public, anyone will be able to read your story to learn about indoor air contamination in mobile homes. But if you change your mind about sharing a story publicly you can pull all of your publicly shared information into the private and secure database used exclusively by the research team. You can do this at any time on the privacy page by clicking the "Make all my sharing private" button. This will change all future copies of publicly accessible data but we can't do anything about people who have already seen or downloaded your stories and could potentially recirculate them.
Your account data
If you choose to privately share your data, your answers will contribute to graphs and averages that can be seen publicly but there will no links between those graphs or averages and your username (or any other potentially identifying information).
At any time you can download all of your contributions to WWB in a single document by clicking the "download my data" button on the privacy page.
If, for whatever reason, you decide that you would like to close your account you may do so at any time by clicking the "close my account" button on the privacy page. This will not only pull your publicly shared information from the website but it will also remove your answers from aggregate representations like graphs.
Am I looking for a VIN or a HUD number?
If you are residing in a home that could be classified as a "recreation vehicle," "commercial coach," "camping vehicle," "travel trailer," "park trailer," or "tip-out,"it is regulated as a vehicle by the Department of Transportation and will have a Vehicle Identification Number or VIN. A VIN number is engraved into the tow bar of travel trailers and campers and also printed on their title. A VIN number are 17-charecters long and do not include the letters I (i), O (o), or Q (q) (to avoid confusion with numerals 1 and 0).
Image of A VIN number (sometimes they are embossed straight into the tow hitch and can be a bit more difficult to locate)
If you are residing in a "mobile home" or "manufactured home" that is built for permanent occupancy by a single family, it is regulated by the Department of Housing and Urban Development (HUD) and will have a serial number or HUD number.
The HUD certification number or the serial number can be found on mobile or modular homes on the tow bar, on the data plate on the exterior, on the bill of sale, on the home’s title or, sometimes, behind a bedroom closet door, electrical panel box door, or kitchen cabinet door, each section of a double or triple-wide will have its own serial number. They are typically composed of three letters followed by six or seven numbers.
_Image of a HUD number on the exterior of a mobile home. _
For more help in understanding or locating you HUD number see this helpful blog post.
General information on Domestic Indoor Air Quality The average formaldehyde level in manufactured homes ranges from 15.5 ppb (CDC, PDF) to 36.3 ppb (California’s Office of Environmental Health and Hazard Assessment, PDF)—about four times higher than those of conventional homes.
Lawrence Berkeley National Laboratory has an extensive indoor air quality scientific findings resource library (Link). The EPA's website on the indoor air quality of homes (Link). The EPA's Toxicological Review on Formaldehyde Inhalation (Link). For more information call the EPA Toxic Substance Control Act (TSCA) Assistance Line (202) 554-1404.
Mitigation NASA was an early pioneer in using plants to clean indoor air, also known as phytoremediation. Read one of their studies here: (PDF). Recent studies on phytoremediation are finding that it is both the leaves and microbes that live in potting soil that help clean formaldehyde and other common indoor toxins from the air (Link).
One of the reasons that this website exists is because of the lack of studies that document long-term residential chemical exposure. Many industry-funded studies suggest that formaldehyde emissions decrease so rapidly after construction that long-term domestic exposures should not be an issue (PDF 1+ 2). Other studies on the factors of chronic residential formaldehyde exposure found that over time ventilation lost its efficacy in mitigating formaldehyde levels and source removal was the most effective mitigation technique (Link).
Some formaldehyde in your home could be coming from permanent press fabrics which are treated with DMDHEU (1,3-dimethylol-4,5-dihydroxyethylene urea), which is formaldehyde based, to keep them free of wrinkles. One study found that washing these cloths in slightly acidic deionized water reduced the amount of formaldehyde coming out of them. Yet, washing them slightly-to-moderately alkaline water, like the tap water in New Orleans, increased the formaldehyde off-gassing (Link). Unless you have a lot of these kinds of shirts, this will likely be a minor contributor to decreased indoor air quality.
Studies on the Air Quality of FEMA Trailers Centers for Disease Control and Prevention's Studied on FEMA trailers (Link). The Agency for Toxic Substances and Disease Registry tests from 2007 (Link). A pilot study on the health effects of FEMA trailers on children was completed in the Fall of 2013 (Link).
FEMA Trailer Sales Certificates The conditions of sale and liabilities of the various models of FEMA trailer can be viewed in the following document acquired by way of the Freedom of Information Act (PDF).
Where We Breathe is a collaborative research platform investigating how the air inside manufactured housing may affect residents’ health. The project seeks to better understand the effects of on-going low-level formaldehyde exposure, create a collective conversation about indoor air quality among the residents of manufactured housing across the country, and help the exposed explore mitigation options.
Log in (hyperlink’d) tell us your experiences to contribute to a better scientific understanding of formaldehyde exposure and to share stories, information and advice with other people across the country and facing similar issues.
We’ve created a public repository of information related to indoor air quality within manufactured housing, what we refer to as our “Knowledge Base.” Anyone can read these documents and any registered user can add their own research.
In the future we hope to establish a lending library of formaldehyde sensors that can be requested from this website and mailed to your home. We are also hoping to develop inexpensive phytoremediation kits (ie using house plants to clean the air).
The project is run out of Public Lab, a grassroots environmental monitoring non-profit based in New Orleans, and is funded by the Passport Foundation.
Jeffrey Warren leads the development of the WWB webtool. Warren is the creator of GrassrootsMapping.org and co-founder and Research Director for the Public Laboratory for Open Technology and Science, Warren designs mapping and civic science tools and professionally flies balloons and kites. Notable software he has created include the vector-mapping framework Cartagen and orthorectification tool MapKnitter. He is a fellow at MIT's Center for Civic Media and an advocate of open source software, hardware, and data. He co-founded Vestal Design, a graphic/interaction design firm in 2004, and directed the Cut&Paste Labs project, a year-long series of workshops on opensource tools and web design in 2006-7 with Lima designer Diego Rotalde. Jeff holds an MS from MIT and a BA in Architecture from Yale University, and spent much of that time working with artist/technologist Natalie Jeremijenko, building robotic dogs for public science investigations.
Nicole Novak, Epidemiological: Novak designed the research protocol and analyzes the quantitative data in addition to facilitating outreach to the Hispanic migrant labor communities in the Midwest. Novak, a doctoral candidate in Epidemiologic Science at the University of Michigan-Ann Arbor, holds a masters in Global Health Science from the University of Oxford. She is the 2013-2014 recipient of the Angus Campbell Fellowship for Survey Research (Institute for Social Research-University of Michigan).
Dr. Nick Shapiro is the lead researcher of WWB. Shapiro holds a doctorate in anthropology and a masters in medical anthropology from the University of Oxford. In his doctoral work Shapiro tracked the resale of 150,000 FEMA trailers across the US using ethnographic, GIS and citizen science techniques. Shapiro began to develop the concept of this project during an NEH fellowship at University of Southern California’s Institute of Multimedia Literacy in 2011. He is currently a post-doctoral researcher in Goldsmiths’ Department of Sociology where he studies environmental monitoring practices and devices as a part of the European Research Council funded Citizen Sense project.
Melissa Nunes, Developer: Melissa Nunes is a web developer and spatial technology freelancer whose interests include (but are not limited to) democratic knowledge systems, DIY, and appropriate technology. Melissa is a founder of Vancouver's Streets For Everyone, an organization that advocates for street designs that make cycling, walking, and transit attractive and reasonable transportation choices. She also founded and created Kid-Friendly Places, a website for people with kids to find, discuss, and share information about great places to go with children.
Shannon Dosemagen, Executive Director: A founder of Public Lab, Shannon is based in New Orleans as Executive Director of the organization, managing the work of the Public Lab nonprofit. With a background in community organizing and education, Shannon held positions with the Anthropology and Geography Department at Louisiana State University as a Community Researcher and Ethnographer on a study about the social impacts of the BP oil spill in coastal Louisiana and worked at the Louisiana Bucket Brigade, conducting the first on-the-ground health and economic impact surveying in Louisiana post-spill. Shannon is specifically interested in infusing traditional organizing methods of the environmental sector with new media technologies and tools.
Nancy McConnell: A resold FEMA trailer resident in Oklahoma of Cherokee descent who advises WWB on community concerns.
Dr. Steve Wing: An associate professor of Epidemiology at University of North Carolina at Chapel Hill’s Gillins School of Global Public Health.
Dr. Dana Powell: Assistant Professor of Anthropology and an expert in indigenous environmental justice movements.
Becky Gillette: The Director of the Sierra Club’s Formaldehyde Campaign.
Tour: 1 Welcome [Insert User Name] to Where We Breathe!
This is a space where we can work together to understand how indoor air quality affects our families and our pets, and what we can do about it.
This tour will guide you through some of the website’s features.
Tour: 2 (The current 2 & 3 should be combined) User Menu
Up here you can click on your user name and a menu will drop down.
In this menu you can change your privacy settings or your password. Here is also where you will find the Log Out button.
Tour: 3 Questionnaire
In this section you will be asked to answer questions about your manufactured home and how it has affected your life.
You’re experiences are important because manufactured homes have elevated levels of formaldehyde and because scientists are not certain about how long-term exposure to formaldehyde can affect human health. The more people that share their experiences in this systematic---and admittedly sometimes boring--way the better we can all understand the harms of indoor air pollution and figure out what we can do to make the situation better.
Tour: 5 Forum
In the Forum section you can see how your experiences are similar to or different from other (anonymous) people that have completed the questionnaire and connect over common issues.
In other words, the forum is a space where you tell your story and also hear other people’s stories. Chances are that you’re not alone in what you are experiencing.
Tour 6: Knowledge Base
In the Knowledge Base we have collected a number of resources that we think could be helpful for your understanding of manufactured home air quality issues and what you can do about them. This is a collective knowledge base so feel free to add other resources in the comments section and we will incorporate them.
Tour: 7 Let’s work together!
Help set the record straight by sharing your symptoms and teaching scientists about how formaldehyde in your home has impacted you.
Every answer you contribute to this questionnaire will not just help you record your air quality issues but could help to reduce or prevent the indoor chemical exposure of many other people all over the world.