Topics

moderated Suggested Feature - Provide email "call" for a message by specifying the message number


Bob Bellizzi
 

A non-internet savvy user has become a member of a patient advocacy and support group because they have just been delivered a diagnosis of a very  rare disease and the busy, busy specialist is not a good communicator.  They were told "Go to the Internet to find out about it."   Really, this is a frequent occurrence.

If you have never had a medical diagnosis that threatened your independence or way of life or was otherwise life changing you would understand the panic and stress it brings on and that damn specialist only had t5 minutes for me?

They need information and support and ask the same questions that have been answered many times over decades but they are new to all of this and really aren't interested in the finer points and existential usages of groups.io.

They're not used to much in the way of the Internet and at this point further instruction in its' finer points will turn them off because their goal is information about what's next, etc., not internet education.

We have 20 years of questions and answers now and we would like to utilize some of our library of excellent answers for their education and to get them to understand that many others "have been there and done that".  Telling them to go to our group and look at message #160233 won't cut it but sending them that message of how someone else handled it will.

The Mentors supply a level of group-experienced help and are picked for their role because of attributes like patience, communication skills, patience and ability to ferret answers from our archive.  They help newbies transition into the system providing answers and help and a great deal of stress relief for panicked people.

--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Bob Bellizzi
 

Kind of a Grub Hub of info?
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


 

Bob, I totally agree with you about that. People with scary medical conditions, and even people with cats with scary medical conditions, are lucky if they have the presence of mind to increase their internet skills, no matter what level they were at in the first place. Patience is of the essence.


On Sun, Mar 24, 2019 at 10:31 AM Bob Bellizzi <cdfexec@...> wrote:
A non-internet savvy user has become a member of a patient advocacy and support group because they have just been delivered a diagnosis of a very  rare disease and the busy, busy specialist is not a good communicator.  They were told "Go to the Internet to find out about it."   Really, this is a frequent occurrence.

If you have never had a medical diagnosis that threatened your independence or way of life or was otherwise life changing you would understand the panic and stress it brings on and that damn specialist only had t5 minutes for me?

They need information and support and ask the same questions that have been answered many times over decades but they are new to all of this and really aren't interested in the finer points and existential usages of groups.io.

They're not used to much in the way of the Internet and at this point further instruction in its' finer points will turn them off because their goal is information about what's next, etc., not internet education.

We have 20 years of questions and answers now and we would like to utilize some of our library of excellent answers for their education and to get them to understand that many others "have been there and done that".  Telling them to go to our group and look at message #160233 won't cut it but sending them that message of how someone else handled it will.

The Mentors supply a level of group-experienced help and are picked for their role because of attributes like patience, communication skills, patience and ability to ferret answers from our archive.  They help newbies transition into the system providing answers and help and a great deal of stress relief for panicked people.

--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


--
J

Messages are the sole opinion of the author, especially the fishy ones.
My humanity is bound up in yours, for we can only be human together. - Desmond Tutu


Bob Bellizzi
 

On Sun, Mar 24, 2019 at 09:24 AM, Brian Vogel wrote:
Most of the groups I am on here are not frequented by tech geeks and virtually all of them, save this one and the Group Managers Forum, are used by individuals of all ages who are blind or visually impaired.   All of them are "sophisticated enough" to know how to click through on a link to read something and, if they are not, they need to become so.
So Brian, it's sink or swim right off the bat you throw them into the deep end and if they don't get it, their tough luck?

We are focused on helping the patient regain their functions rather than teaching them how to use the internet.  It may be inefficient but it's effective and has been for almost 2 decades.
 
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


 

On Sun, Mar 24, 2019 at 10:43 AM, Bob Bellizzi wrote:
it's sink or swim right off the bat
To further mix metaphors, it's different strokes for different folks. ;) Seriously, different groups have different cultures, stress levels (e.g., medically oriented groups probably have more), and internet chops. It's a balancing act.
 
--
J

Messages are the sole opinion of the author, especially the fishy ones.
My humanity is bound up in yours, for we can only be human together. - Desmond Tutu


 

Brian,

I don't get the idea of re-sending a message, in its entirety, by
e-mail at all. ... why not send the direct link to the message that
the user can click to read.
I think the issue is that the group's Messages may not be public.

If not then the link won't work - it will redirect the person to log in. I think it is the extra steps of dealing with a Groups.io logon (as simple as that is) that Bob is trying to avoid.

There are work-arounds, like using a public Wiki or a subgroup with public archives, but both of those require more effort on the part of the group moderators/mentors to curate the existing messages into generic help pages. That's a fairly big ask. And probably a better topic for GMF than here (how to use existing features to get what you want).

Shal


 

On Sun, Mar 24, 2019 at 11:31 AM, Shal Farley wrote:
I think the issue is that the group's Messages may not be public.

If not then the link won't work - it will redirect the person to log in.
Shal, Brian gets that but thinks the person should be savvy enough to log in, or learn to. I'm on the fence but I think it's a good feature no matter which side of the fence you're on.
 
--
J

Messages are the sole opinion of the author, especially the fishy ones.
My humanity is bound up in yours, for we can only be human together. - Desmond Tutu


Bob Bellizzi
 

Thank you, Shal.  You hit the nail on the head rather  than the thumb.
The Angst is a result of being told "you need a transplant."  ..Of course you are more interested in why, how, etc than "stupid logging in crap".  Deal with all that later.
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


KWKloeber
 

<<I don't get the idea of re-sending a message, in its entirety, by e-mail at all.>>
 
Whether it's in its entirety or automatically emailing a link to a msg, it would be a valuable option AND one that many forums already offer (e.g., simplemachines.)  Hey how about inserting both in the email?
<<<We do members no favors by encouraging any kind of "digital illiteracy," and there are very, very few people today who don't know how to use a web browser
If it does, then teach.>>>
 
You probably haven't been in the seat of teaching your parents (yes, it was "a few" yrs ago) to use a browser or email client, no less to highlight, right-click, copy, paste, etc.  Let me revise that, TRY to teach, 50% unsuccessfully/50% successfully so long as there wasn't more than 2 days between uses.   
That's sitting next to them, not long distance instructions. 
 
There's just some old dogs who cannot or don't want to learn new tricks.  What's wrong with accommodating them to the extent practical?  The savvy users aren't forced to use any option.
 

Virus-free. www.avg.com


Bob Bellizzi
 

We do teach them but first you have to reduce the stress and angst levels by providing useful information about the subject that was the reason they came to you in the first place.

--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Sarah k Alawami
 

I do believe in the sync or swim idea myself. As my prof of a class said to us, you either say with me or get left behind, and I'm not slowing down for you.

On 24 Mar 2019, at 10:43, Bob Bellizzi wrote:

On Sun, Mar 24, 2019 at 09:24 AM, Brian Vogel wrote:
Most of the groups I am on here are not frequented by tech geeks and virtually all of them, save this one and the Group Managers Forum, are used by individuals of all ages who are blind or visually impaired.   All of them are "sophisticated enough" to know how to click through on a link to read something and, if they are not, they need to become so.
So Brian, it's sink or swim right off the bat you throw them into the deep end and if they don't get it, their tough luck?

We are focused on helping the patient regain their functions rather than teaching them how to use the internet.  It may be inefficient but it's effective and has been for almost 2 decades.
 
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Bob Bellizzi
 

Sarah,
That would be a great way for a Charitable institution to operate.
"Hey you, it's my way or the highway! You have 3 days to learn how to use the system or we kick you out!"
We could even use some of that attitude on our donation thank you notes, or maybe imprint this on the envelopes
"hey, stupid, get with the program and give us more money"

Hopefully, Mark will lock this thread before it degenerates even further
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Sarah k Alawami
 

Hey, that's how I ran my choirs. You either do things my way, or theres the door. By the way all of the students stayed and cried a lot when I had to leave due to some things that happened. But I didn't slow down for them either. I'm down with that.

Take care

On 24 Mar 2019, at 13:55, Bob Bellizzi wrote:

Sarah,
That would be a great way for a Charitable institution to operate.
"Hey you, it's my way or the highway! You have 3 days to learn how to use the system or we kick you out!"
We could even use some of that attitude on our donation thank you notes, or maybe imprint this on the envelopes
"hey, stupid, get with the program and give us more money"

Hopefully, Mark will lock this thread before it degenerates even further
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Jim Higgins
 

Received from Bob Bellizzi at 3/24/2019 08:45 PM UTC:

We do teach them but first you have to reduce the stress and angst levels by providing useful information about the subject that was the reason they came to you in the first place.

But the stress levels can be reduced faster by just emailing them the information instead of sending them a message number along with directions about how to send an email request in a very specific format in order to get that info.

I bet you're thinking about preparing a template response containing directions and then paste the message number to be used with those directions into it. Why not just prepare templates with information on the disease. As many as there are variants of the disease, and send them as needed? Cut out that middle part involving "calling" the message that does nothing to reduce stress and angst.

Jim H


Brian Vogel <britechguy@...>
 

On Sun, Mar 24, 2019 at 05:00 PM, Sarah k Alawami wrote:
Hey, that's how I ran my choirs. You either do things my way, or theres the door.
And I've been in choirs, and other organizations, that are run that way and they generally run more smoothly than those where everything has to suit everybody (which it never can and never will).

Every time someone "can't do something" that can be easily done, if they bother to learn how, the solution isn't to do it for them, but teach them how to do it themselves.  You've seen me use this technique, and in no uncertain terms, on several groups we both frequent and two of which I moderate.

I prefer to teach people how to be independent and how to do the things that any modern computer user should know how to do.  And that includes for clients of all ages and existing skill levels.  I do them no favors by pretending that spoon feeding is going to be the norm when issues arise.

Patiently explaining to those who don't know how to use features that already exist should be the first order of business.
 
--

Brian - Windows 10 Home, 64-Bit, Version 1809, Build 17763 

     I can hire one half of the working class to kill the other half.

           ~ Jay Gould, U.S. financier & railroad robber baron (1836 - 1892)


Brian Vogel <britechguy@...>
 

On Sun, Mar 24, 2019 at 01:43 PM, Bob Bellizzi wrote:
So Brian, it's sink or swim right off the bat you throw them into the deep end and if they don't get it, their tough luck?

We are focused on helping the patient regain their functions rather than teaching them how to use the internet.  It may be inefficient but it's effective and has been for almost 2 decades.
Great strawman, that's for sure.  Nothing I said, nothing, implies that people should not be patiently taught how to get to a group archive and search it.

And part of helping someone, regardless of the issue at hand, is teaching them to be independent in the tools that they're using or started using.  Accessing a group archive for individuals who have any given issue, and are interested in what others who have the same one have said (probably many times) over time, is an essential skill in the circumstances you describe.  Period.
 
--

Brian - Windows 10 Home, 64-Bit, Version 1809, Build 17763 

     I can hire one half of the working class to kill the other half.

           ~ Jay Gould, U.S. financier & railroad robber baron (1836 - 1892)


Bob Bellizzi
 

Jim H,

We already have a considerable amount of collateral literature, in a couple of languages.  While this is helpful, it's never the entire answer.
We also have experts' videos professionally edited from our symposiums.

"I bet you're thinking about preparing a template response containing directions and then paste the message number to be used with those directions into it. "
WRONG, that's what the WIKI is for and we have a great one with short, informative, simple instructions.

We do everything we can to help these people in their journey through their genetic disease even if it means we need to be nice to them <g>. 
You won't have much word of mouth or other good publicity by being a storm trooper.
That just doesn't work in our world.

--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation


Jim Higgins
 

Received from Bob Bellizzi at 3/24/2019 10:33 PM UTC:

Jim H, We already have a considerable amount of collateral literature, in a couple of languages. While this is helpful, it's never the entire answer.We also have experts' videos professionally edited from our symposiums.
"I bet you're thinking about preparing a template response containing directions and then paste the message number to be used with those directions into it."
WRONG, that's what the WIKI is for and we have a great one with short, informative, simple instructions.

And how do all those folks who are too unsavvy to take a message number and find the corresponding message via the web interface deal with a Wiki that can only be accessed via the web interface?


We do everything we can to help these people in their journey through their genetic disease even if it means we need to be nice to them <g>. You won't have much word of mouth or other good publicity by being a storm trooper. That just doesn't work in our world.

Bob Bellizzi

Yet another strawman. No one is suggesting being a storm trooper.

I guess what I'm suggesting is that "unsavvy" subscribers is getting worn out as a reason for fringe enhancement requests that involve contacting a mentor who can't be bothered to forward a copy of a message, but rather forwards only the message number and instructions on how to "call" that message by sending a very specifically formatted email.

I think this suggestion is a waste of time and that a perfectly good alternative is already available.

Jim H


 

On Sun, Mar 24, 2019 at 05:24 PM, Jim Higgins wrote:
I think this suggestion is a waste of time
What's so awful about helping people out? But forget helping people out. What if someone wants a copy of a message in their email so that they can forward it to someone else? In our group, that might be useful for people who want to forward a message to their veterinarian, for example. Our group members tend to be very internet savvy and people are using the website all the time. I don't think it would be coddling them to provide this feature. Not that I have anything against coddling in the first place. Call it good service, or good old user-friendliness.
 
--
J

Messages are the sole opinion of the author, especially the fishy ones.
My humanity is bound up in yours, for we can only be human together. - Desmond Tutu


Bob Bellizzi
 

You obviously misread the request and  are reacting on an incorrect assumption
Go back and read from the beginning.  Catlady understood and so did Brian but not you
--

Bob Bellizzi

Founder, Fuchs Friends ®
Founder & Executive Director, The Corneal Dystrophy Foundation