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For a group discussing medical info

Brian Jennings
 

I was hoping to use Groups.io to be a hub for a friend who has a scary diagnosis that preliminarily involves the keywords "brain" and "tumor" .?? We have local friends and distant friends and family.? The idea is to use the platform to coordinate hospital/home visits, who's coming in to town (calendar) and post in one place any tidbit of info if a member of the team is present while a doctor is discussing something important, because let's face it, "brain" and "tumor" do not mix well with "short term memory". ??

So, it's intended as a hub to share HIPPA-covered conversation. So "open" and "private" are the areas of confusion.? When I try to create a group, currently as a test to see if this works for friends, family and the man of the hour at the center, what the heck does this warning mean??

"Are you sure you wish to make this group's messages private? Private messages cannot be reverted to open later.? "?

First, the platform just said in the Create Group guidlines "if this is a test, make it private" now it's warning me if I take that recommendation??? Am I dooming ALL messages to be private forever (and is that even a bad thing for my group?), or JUST the ones I'm doing as a test and I can make the site open in the future and so future messages will be open??

It may be good for the Group to be in the directory as existing/displayed, but private/open messages are not defined in the FAQ.?
Is there a FUQ list? (frequently UNasked questions?)?? Can I do the reverse, take "open" messages "private"???? I'm not warned in that direction.? What does "open" even mean, I can google them and they'll come up???? Or on the Groups.io site only??

Thanks for clarifying.
BJ
 

On Sun, Nov 10, 2019 at 09:17 PM, Brian Jennings wrote:
So "open" and "private" are the areas of confusion.
The words should be Public and Private.? For a group with Public archives, anyone that goes to the group page can read the messages, as /g/updates

With Private archives, you must be a member of the group and logged in before you can read them, as /g/Rialta

I'm sure you'll want it Private.? You can have it listed in the Directory without a problem as long as you don't reveal anything that should be private on the Home page.

As far as discussing HIPAA covered conversations, that would need to be determined by a lawyer.

Duane
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BJ -- I will assume that most of these questions are rhetorical and all you really want to know here is what's going on with the private archives warning.

Private archives means that those messages are visible only to subscribers. In stark contrast, a public archive can be read by anybody. And when I say anybody, I mean anyone in the world who finds the URL.

For example, the archives here in GMF can be read by ANYONE. You don't need to be subscribed to GMF...you don't even need to have a groups.io account. I've even found some of the posts indexed in search engines.

Understandably, many people might be reluctant to post things to a public group, even if it doesn't involve a sensitive issue like medical privacy. That's why the privacy setting is displayed on your group's home page. And that's also why once you make your group private, you cannot make it public again. It is a breach of trust -- and may not even be legal -- to tell people that their posts will be restricted to a limited audience, only to have the group Owner later betray that trust by changing his mind.

Hope this helps,
Bruce
Brian Jennings
 

Thank you Duane!

Yes, HIPAA (not HIPPA)? All I meant by that is:
Doctor tells a family member something
Family member needs to tell the Team something

No lawyer needed.? You know how things like chemo work, you spend 2 days in the hospital, then have an insane regimen of pills to do at home. And it goes: pill X every 4 hours for 3 days then stop, pill Y is every 6 hours for 5 days then stop. ? Pill Z starts 3 days after hospital chemo every 8 hours.? Pain meds as needed but not to exceed 4 in 24 hours..??

So yes, the private messaging is the way to go.?
BJ
 

Hi Brian -?
When determining your settings you might also want to consider what role you want your group to play. ?Do you want to only keep family and friends updated or do you want to encourage feedback or help schedule visits, etc.?
When I was going through cancer treatment I set up an invitation only blog with updates and the general info I was comfortable sharing. I sent an email that notified friends of the update and url, which also allowed them to email back. Only a few very close folks were on an email where I shared more graphic information and feelings.

You may want to not only make the group/messages private but also not list in the directory. That way you can send invites to those who should be included and also require approval.?

Please be very careful with the information you share or discuss on the group and ensure it is information the primary person - the patient and center of this team - would be comfortable sharing and who she would want it shared with. One of the worst things about being a patient is not having control of the direction your life is taking, especially if those around you feel you may not be competent. It¡¯s important to include the patient in things as simple as updating family and friends - even if you think they don¡¯t hear or understand.?

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