warning on each page that this site can not offer medical advice

[jywarren]

Whichever way we decide to structure privacy and access, it occurred to me that as people fill out the survey, they could conceivably have the expectation that their concerns will be addressed on an individual basis -- i.e. if you have a cough, will the questionnaire recommend a treatment?

Since I'm assuming that beyond listing resources, the site itself will not be making that kind of medical recommendation, we should make that abundantly clear -- and it's a good opportunity to offer some extra info on the side or below the questionnaire which is always visible --

Maybe something like "what happens to these questions?" and perhaps an indicator of what 'privacy state' you're in.

[jywarren]

Hey @shapironick - could you pen some very brief statement like "WhereWeBreathe is a collaborative project to share information and resources about xxx, but the WWB staff cannot provide direct medical advice or support. See this list of resources and the knowledge base to find medical assistance." that we could put on every page, probably in the footer, but potentially somewhere even more visible? We could put it in the footer and then have a "Have urgent medical issues?" link in a more visible location that links down to this section of the footer. Does Nicole have input on this?

[shapironick]

Here is some possible text: "WhereWeBreathe is a collaborative project to collect and share information and resources about the potential health impacts of manufactured housing, but the WWB staff cannot provide direct medical advice or support. Please refer to the knowledge base for more resources and call the EPA Toxic Substance Control Act (TSCA) Assistance Line (202) 554-1404 for the contact information of your state indoor air quality agent.”

Does this seem okay?

I talked to Nicole about the urgent medical issues and we are both not aware of any resources for urgent medical issues. I called that TSCA assistance line and they said they can give people all the information they have and help connect them to state agencies so i think that may be out best bet.

[jywarren]

That sounds pretty good. What about an ask to solicit ideas for urgent resources? Someone may have a suggestion.

On Tue, Feb 10, 2015 at 5:54 PM, shapironick notifications@github.com wrote:

Here is some possible text: "WhereWeBreathe is a collaborative project to collect and share information and resources about the potential health impacts of manufactured housing, but the WWB staff cannot provide direct medical advice or support. Please refer to the knowledge base for more resources and call the EPA Toxic Substance Control Act (TSCA) Assistance Line (202) 554-1404 for the contact information of your state indoor air quality agent.”

Does this seem okay?

I talked to Nicole about the urgent medical issues and we are both not aware of any resources for urgent medical issues. I called that TSCA assistance line and they said they can give people all the information they have and help connect them to state agencies so i think that may be out best bet.

— Reply to this email directly or view it on GitHub https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-73802122 .

[shapironick]

sounds great to me

On Wed, Feb 11, 2015 at 10:57 AM, Jeffrey Warren notifications@github.com wrote:

That sounds pretty good. What about an ask to solicit ideas for urgent resources? Someone may have a suggestion.

On Tue, Feb 10, 2015 at 5:54 PM, shapironick notifications@github.com wrote:

Here is some possible text: "WhereWeBreathe is a collaborative project to collect and share information and resources about the potential health impacts of manufactured housing, but the WWB staff cannot provide direct medical advice or support. Please refer to the knowledge base for more resources and call the EPA Toxic Substance Control Act (TSCA) Assistance Line (202) 554-1404 for the contact information of your state indoor air quality agent.”

Does this seem okay?

I talked to Nicole about the urgent medical issues and we are both not aware of any resources for urgent medical issues. I called that TSCA assistance line and they said they can give people all the information they have and help connect them to state agencies so i think that may be out best bet.

— Reply to this email directly or view it on GitHub < https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-73802122

.

— Reply to this email directly or view it on GitHub https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-73905676 .

[shapironick]

Some potential medical resources, but very long-shot-y:

The Association of Occupational and Environmental Clinics (AOEC) has developed a network of clinics in the United States to provide expertise in occupational and environmental issues. Contact: AOEC, 1010 Vermont Avenue, NW, #513, Washington, DC 20005 • Phone: 202-347-4976 • FAX: 202-347-4950 • e-mail: aoec@dgs.dgsys.com • AOEC Clinic Director: http://occ-env med.mc.duke.edu/oem/aoec.htm . The American College of Occupational and Environmental Medicine (ACOEM) is an association of physicians and other health care providers sp ecializing in the field of occupational and environmental medicine. Contact: ACOEM, 55 West Seegers Road, Arlington Heights, IL 60005 • Phone: 847-228-6850 • FAX: 847-228-1856.

[jywarren]

Would you be comfortable posting these on a resources page?

On Sun, Feb 15, 2015 at 4:12 PM, shapironick notifications@github.com wrote:

Some potential medical resources, but very long-shot-y:

The Association of Occupational and Environmental Clinics (AOEC) has developed a network of clinics in the United States to provide expertise in occupational and environmental issues. Contact: AOEC, 1010 Vermont Avenue, NW, #513, Washington, DC 20005 • Phone: 202-347-4976 • FAX: 202-347-4950 • e-mail: aoec@dgs.dgsys.com • AOEC Clinic Director: http://occ-env med.mc.duke.edu/oem/aoec.htm . The American College of Occupational and Environmental Medicine (ACOEM) is an association of physicians and other health care providers sp ecializing in the field of occupational and environmental medicine. Contact: ACOEM, 55 West Seegers Road, Arlington Heights, IL 60005 • Phone: 847-228-6850 • FAX: 847-228-1856.

— Reply to this email directly or view it on GitHub https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-74437282 .

[shapironick]

I started to update the wiki with that information but I think it is too much of a longshot. I don't want to give people false hopes that they can get a medical professional to pay any attention to them on their own. During the initial testing phase I'll give the contact info to our extra advanced participants and see if it gets them anywhere. If they can make some movement happen then we can put it in the final knowledge base.

On Tue, Feb 17, 2015 at 4:51 PM, Jeffrey Warren notifications@github.com wrote:

Would you be comfortable posting these on a resources page?

On Sun, Feb 15, 2015 at 4:12 PM, shapironick notifications@github.com wrote:

Some potential medical resources, but very long-shot-y:

The Association of Occupational and Environmental Clinics (AOEC) has developed a network of clinics in the United States to provide expertise in occupational and environmental issues. Contact: AOEC, 1010 Vermont Avenue, NW, #513, Washington, DC 20005 • Phone: 202-347-4976 • FAX: 202-347-4950 • e-mail: aoec@dgs.dgsys.com • AOEC Clinic Director: http://occ-env med.mc.duke.edu/oem/aoec.htm . The American College of Occupational and Environmental Medicine (ACOEM) is an association of physicians and other health care providers sp ecializing in the field of occupational and environmental medicine. Contact: ACOEM, 55 West Seegers Road, Arlington Heights, IL 60005 • Phone: 847-228-6850 • FAX: 847-228-1856.

— Reply to this email directly or view it on GitHub < https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-74437282

.

— Reply to this email directly or view it on GitHub https://github.com/publiclab/wherewebreathe/issues/65#issuecomment-74761940 .

[jywarren]

It's rough - i mean, is the short answer that there are no resources available besides what you can educate yourself on, or care through your PCP (assuming you have insurance)?

[jywarren]

If so, I think if we're really frank, like:

The unfortunate truth is that there are not a lot of resources available... Below we list ...

and

If you are aware of resources which you'd like to share, please send them to the facilitators list at (link here) and we will take a look and add them to this list.

And/or, we can link to a PL wiki page where people can just post resources, but they wouldn't be as anonymous.

[shapironick]

+1