Proposal:
We have two halves of the site that are not mutually exclusive but have different ways of doing privacy. One is "The Study" the other is "The Forum." Knowledge Base would remain the same and open to unregistered people.
• (optional) upon the registration people would not need to enter their VIN/HUD number--that will be reserved only for the study and would be part of the first question of the survey. So one less potentially identifying piece of information we force people to enter at the beginning.
• Once registered people would be brought to the privacy page. The study would have no privacy switch just a informed simple opt-in [start the survey] or opt- out go [take me straight to the forums].
• Going straight to the Forum would mean that you couldn't take the survey and would not be entitled to hardware [see below], but all the data from the study would be shared in aggregated form to the graphs in the forum section and collected by the researchers in a raw way.
o In this setup the forum graphs will have all available data--so the community will have the same graphs as the researchers (I was worried about a discrepancy with our current set up)
o I don't think community only data is viable [see below], but with the "join the research team" function I think that we can help interested users work through the data with us, or in whatever other useful way that is of interest.
• The Forum would have three privacy settings [Researchers Only, Community only, Community and Researchers]
• There would be a check box at the end of the privacy page saying something like "Once the Study has reached 200 participants we will put together a press release with all of our results, check here if, at that future date we can contact you to see if you would be interested in sharing your story publicly. We can help you put your story together to make your story as strong as possible."
• These settings would be set at the beginning. The Forum section privacy settings could be changeable at any time at any time, so that researchers would not be able to see previously shared Forum information if they changed their forum settings to community only. A level of data control that wouldn't work if the survey and the forums had the same privacy settings.
Community only survey data
For the following reasons I am very wary of having a "community only" data option for the survey:
After four years of doing research with manufactured home residents I am almost positive that they would not want that survey data only for themselves, the would not be concerned about sharing data with researchers, and they would not have the capacity analyze that data [Becky Gillette who has worked in these communities for nine years and is not a researcher also agrees].
"Community only" as a privacy setting is a bit illusory as we cannot police who is in the community and what they do with the data. Its basically public with a speed bump.
If we do allow community only data then it makes sense that they should have the 'raw' data, otherwise the inter-question relationships for individual users [ie I stayed in the trailer for x long and developed x symptom but smoked x cigarettes] will not be possible. This gets into Jeff's provocation about why should researchers get access to a form of potentially-identity-revealing data that the general community does not. But we have no way of insuring that 'community only' data will be community only, especially if it is downloadable in its raw form as opposed to graphically represented as averages. Community only is tantamount to having it be public because a VIN number is the only barrier between public and community and there is no protections that the downloaded data would not be circulated beyond the community. Whereas researchers have strict ethical guidelines about what they can do with the data. [For instance, Nicole is probably going to have to store and analyze the downloaded data on a computer that is never connected to the internet and lives permanently in a locked room.] So the privilege of being shared a higher resolution of data is not just conferred by abstract status but earned by a mandated precaution. I understand the provocation but I think our user's data will be markedly safer if we don't share raw survey data via a 'community only' survey privacy option. Then, if "community only " survey data is only shared in the aggregate then I don't think it will be helpful data in terms of connecting exposures to health. Its a lot of work to fill out a survey only to get it back in a form that may only be helpful in terms of knowing you're not alone in experiencing certain things. And if that is all they are going to get out of it, then it would probably be best to have them skip the survey and just go straight to the forum, where they can get that in a more full-bodied/full narrative kind of way.
o I think the way this could be dealt with this would be to have some sort of online easy-to-use version of stata that would allow the data to be able to be analyzed in an encrypted online space without it ever being downloaded (this would preempt the re-hosting/unauthorized sharing problem) and it would potentially be an interesting space for collaboration. But that would take a million bucks.
The opt-in/opt out setting is very straightforward. If we find a community [like a Native Nation] with the desire and capacity to analyze their own data then we can cross that bridge when we come to it. And I think it will be relatively easy to do.
Hardware for Participation
Users could choose not to participate in the study and go straight to the forum where they could see data from the study that is shared with the community. But going straight to the forum without joining the study would mean that they can't take the survey and won't have access to the lending library. They will still be able to see on the PL website how to build or inexpensively buy their own, but won't get lent one for free. I think this is in the vein of how PL already does things, as PL normally says: a) here's how to DIY with a little time and a little money or b) here is a way to buy one from us for a bit more money but no time. What is happening with WWB is we are asking for more time and no money and the time they give provides information that will be used to directly advocate on their behalf. So I think we will be doing resource/story sharing and peer support but asking to invest time into a community project in exchange for kit. Its a give and take that I think will make sense and if they don't want to answer they can have the other options or if they are really determined they could probably just take the survey and just skip every question.
We can maybe make the lending library open after we have reached 200 users/tests. So we can also think of it as a trial period for the lending library--we can work out the kinks as we refulate the flow of requests via the survey.
If we share hardware freely I think we will not get many survey users and if people can get the test kits before they take the survey then it will likely mess up [a technical term] the epidemiological data. Perhaps most importantly, the process of this project is about getting people to think with their bodies as bodies are the instruments of detection that will stay with them always and kit will only be with them for a matter of days if they get it lent to them.
Site Structure
I think we should have some narrative prompts to tell stories in an open way as the graphs right now don't make me want to tell stories they just feel like sitting back and watching my story be told back to me. We don't want data to be the only way for them to understand their issues, but data to be an added layer in combination with other kinds of story telling.
The survey and the forum would both have the following sections:
• House and Household
• Individual Health Effects
• Mitigation
• Other indicators of poor IAQ (Mold visible, smell, perceptions of outdoor air)
• Demographics and other risk factors
• Formaldehyde Testing (linked to PL page where we will describe how to do DIY low-cost monitoring or buy cheap off the shelf kit)
• Join the research team
And there would also be other sections of the forum that do not relate directly to the survey:
• Organize and Mobilize
• Remediation (linked to PL page where we discuss how to do DIY low-cost phyto remediation or buy cheap off the shelf kits)
Why "Study" vs "Questionnaire"
On our first call Shannon expressed concern about the word "study" being used as a reference to the whole site. So by labeling part of the site a study we can be clear about the multiple forms of evidence the site will collect, but we will also we will be delimiting the study space and creating a community space and they can control how they interface. All the aggregated data flows into the forums.
Another reason to say study and not questionnaire or survey is that the free formaldehyde testing would be part of the study. After you completed the survey users would be prompted that they could request a free formaldehyde test kit. And then they could enter the data in the site and share that.
People that do forum-only could buy their own or build their own low cost kit and contribute data to the project just like other crowd-sourced PL projects.
Other features: (can open in github if of interest to others)
• If people have opted into the study and have a Forum privacy setting other than "research only" they will get a notification when they move from the study space to the forum space that a wider audience now capable of viewing and vice versa.
• Section progress indicator in addition to a question progress indicator. For the next phase I think we will need more than just a question progress indicator that itemizes the number of questions, we should also indicate the other sections. This will be important for the forum only people to know what's next and for the survey people to know that they can continue on to the next section of the survey. This will also allow forum-only people to get to where they want and not obey the linear progression of the survey.
• Photo uploader would be nice for the forum section as people like to tell stories in pictures (pictures of mold, or rashes, cats having seizures or water leaks....and maybe some happy things as people also want to be able to tell some happy things sometimes).
• Users would need to be able to see if a story/item was shared only with the community so that they would know what they could reference in their posts if they also shared with researchers/public.
jywarren
commented
9 years ago
Proposal: We have two halves of the site that are not mutually exclusive but have different ways of doing privacy. One is "The Study" the other is "The Forum." Knowledge Base would remain the same and open to unregistered people.
• (optional) upon the registration people would not need to enter their VIN/HUD number--that will be reserved only for the study and would be part of the first question of the survey. So one less potentially identifying piece of information we force people to enter at the beginning. • Once registered people would be brought to the privacy page. The study would have no privacy switch just a informed simple opt-in [start the survey] or opt- out go [take me straight to the forums]. • Going straight to the Forum would mean that you couldn't take the survey and would not be entitled to hardware [see below], but all the data from the study would be shared in aggregated form to the graphs in the forum section and collected by the researchers in a raw way.
o In this setup the forum graphs will have all available data--so the community will have the same graphs as the researchers (I was worried about a discrepancy with our current set up) o I don't think community only data is viable [see below], but with the "join the research team" function I think that we can help interested users work through the data with us, or in whatever other useful way that is of interest. • The Forum would have three privacy settings [Researchers Only, Community only, Community and Researchers] • There would be a check box at the end of the privacy page saying something like "Once the Study has reached 200 participants we will put together a press release with all of our results, check here if, at that future date we can contact you to see if you would be interested in sharing your story publicly. We can help you put your story together to make your story as strong as possible." • These settings would be set at the beginning. The Forum section privacy settings could be changeable at any time at any time, so that researchers would not be able to see previously shared Forum information if they changed their forum settings to community only. A level of data control that wouldn't work if the survey and the forums had the same privacy settings.
Community only survey data For the following reasons I am very wary of having a "community only" data option for the survey:
Hardware for Participation Users could choose not to participate in the study and go straight to the forum where they could see data from the study that is shared with the community. But going straight to the forum without joining the study would mean that they can't take the survey and won't have access to the lending library. They will still be able to see on the PL website how to build or inexpensively buy their own, but won't get lent one for free. I think this is in the vein of how PL already does things, as PL normally says: a) here's how to DIY with a little time and a little money or b) here is a way to buy one from us for a bit more money but no time. What is happening with WWB is we are asking for more time and no money and the time they give provides information that will be used to directly advocate on their behalf. So I think we will be doing resource/story sharing and peer support but asking to invest time into a community project in exchange for kit. Its a give and take that I think will make sense and if they don't want to answer they can have the other options or if they are really determined they could probably just take the survey and just skip every question. We can maybe make the lending library open after we have reached 200 users/tests. So we can also think of it as a trial period for the lending library--we can work out the kinks as we refulate the flow of requests via the survey.
If we share hardware freely I think we will not get many survey users and if people can get the test kits before they take the survey then it will likely mess up [a technical term] the epidemiological data. Perhaps most importantly, the process of this project is about getting people to think with their bodies as bodies are the instruments of detection that will stay with them always and kit will only be with them for a matter of days if they get it lent to them.
Site Structure I think we should have some narrative prompts to tell stories in an open way as the graphs right now don't make me want to tell stories they just feel like sitting back and watching my story be told back to me. We don't want data to be the only way for them to understand their issues, but data to be an added layer in combination with other kinds of story telling. The survey and the forum would both have the following sections: • House and Household • Individual Health Effects • Mitigation • Other indicators of poor IAQ (Mold visible, smell, perceptions of outdoor air) • Demographics and other risk factors • Formaldehyde Testing (linked to PL page where we will describe how to do DIY low-cost monitoring or buy cheap off the shelf kit) • Join the research team And there would also be other sections of the forum that do not relate directly to the survey: • Organize and Mobilize • Remediation (linked to PL page where we discuss how to do DIY low-cost phyto remediation or buy cheap off the shelf kits) Why "Study" vs "Questionnaire" On our first call Shannon expressed concern about the word "study" being used as a reference to the whole site. So by labeling part of the site a study we can be clear about the multiple forms of evidence the site will collect, but we will also we will be delimiting the study space and creating a community space and they can control how they interface. All the aggregated data flows into the forums. Another reason to say study and not questionnaire or survey is that the free formaldehyde testing would be part of the study. After you completed the survey users would be prompted that they could request a free formaldehyde test kit. And then they could enter the data in the site and share that. People that do forum-only could buy their own or build their own low cost kit and contribute data to the project just like other crowd-sourced PL projects.
Other features: (can open in github if of interest to others) • If people have opted into the study and have a Forum privacy setting other than "research only" they will get a notification when they move from the study space to the forum space that a wider audience now capable of viewing and vice versa.
• Section progress indicator in addition to a question progress indicator. For the next phase I think we will need more than just a question progress indicator that itemizes the number of questions, we should also indicate the other sections. This will be important for the forum only people to know what's next and for the survey people to know that they can continue on to the next section of the survey. This will also allow forum-only people to get to where they want and not obey the linear progression of the survey. • Photo uploader would be nice for the forum section as people like to tell stories in pictures (pictures of mold, or rashes, cats having seizures or water leaks....and maybe some happy things as people also want to be able to tell some happy things sometimes). • Users would need to be able to see if a story/item was shared only with the community so that they would know what they could reference in their posts if they also shared with researchers/public.