Work in progress Need your input thread promotion (dihals)

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David

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DIHALS = The "Do I have ALS? Is this ALS?" forum

I've made the following adjustments to address some issues based on feedback and concerns.

Specifically:
  • The DIHALS section was largely responded to only by mods
  • Also, note: DIHALS messages were recently removed from the "what's new" and "new posts" listings
    • This was done to ensure community content was highlighted for CALS/PALS
    • However, this raises the concern that legitimate DIHALS requests may go unnoticed
    • The concern being that legitimate DIHALS questions may not get enough attention
In order to highlight member questions that are worthwhile the following system has been put in place.

DIHALS messages that are legitimate requests for information (not anxiety etc); will be moved from DIHALS to the sub-forum "Needs community input" (a sub-category of DIHALS).

A good example is this recent request: Please respond - Newly diagnosed and have question

Additionally, the "Needs community input" forum posts have been added to the "What's new" and "new posts" feed system to notify all members that a post from a new member needs their attention.

For mods, if they see a legitimate request in the DIHALS section they can do the following:
  • Move the thread to the "Needs community input" sub-category
  • Leave a permanent redirect from the DIHALS section to the new section
  • Add a thread prefix "Please respond"
All of the above can be done while moving the thread (single action).

If the conversation deteriorates the above actions can be undone and the thread can be put back into the general DIHALS section.

If the conversation comes to a conclusion the thread prefix could be upgraded to Completed.

If any thread prefixes are needed in-between these two (Needs input & Completed) please let me know.

Notes about the "Needs community input" sub-category:
  • Nobody can create threads there (only existing and selected threads can be moved there)
  • Only members of tenure are able to post and respond to these threads once moved into this sub-category
Goals:
  • Allowing threads to be hand selected will reward legitimate concerns and new members with additional exposure
  • Limiting this sub-category to only hand selected threads will ensure this category of information is of the utmost quality
  • Limiting thread posting to the original thread starter and our tenured community will ensure the conversations weed out "noise"
    • As information is collected here it should make for a valuable resource of insightful information not cluttered with excessive worry/anxiety related threads
  • Highlighting threads asking for "Please respond" will hopefully encourage our larger audience of long-term tenured members to share their insight
  • Adding this sub-category to news feeds should properly advertise the thread in hopes of finding a variety of responses/knowledge
Feedback? Better wording suggestions? Recommendations?
 
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KarenNWendyn

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I’m confused and may not have responded correctly. I want the thread Please respond - Newly diagnosed and have question. to be in the community input forum to receive feedback.

I think feedback from community members is valuable. E.g. I value comments from people like Vincent, Kim T, Bestfriends, Codyclan. They’ve had our backsides on numerous occasions.

So I have to think more about this (when I’m less tired) to give you feedback. Meanwhile I think I need help moving that particular thread so it can be open to community response. Thanks.
 

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@KarenNWendyn Yes, I'm assuming all the people you listed are not new members, if so, they're able to post and respond. Moreover, those are exactly the people we want responding in these threads.

This process/system was setup intentionally to allow and encourage tenured members to post and respond. Not only that, but to bring attention and promotion to important threads there's a higher response rate, and higher quality of responses. It's also intended to illicit input from a wider variety of our membership through the thread prefixes advertising "Please respond".

Additionally, it disallows new members from sharing input, which was a concern previously where new people registered and immediately jump into serious conversations regarding diagnosis. Unless they're the thread starter (TS), they can't post in these threads.

Finally, this sub-category can't be cluttered with other threads because nobody has permission to create threads there; they can only be selected and moved there, keeping the discussion quality high.
 

lgelb

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I'll not ask P/CALS to "Please Respond," reading as either redundant or an urgent request. They will respond if they see fit. As Karen has pointed out, a number already do.

Edit: Now that I've seen the new labeling in action, I feel even more antipathy toward it. This is like promoted posts popping up, highlighting a particular group (DIHALS) above P/CALS' forums. And as others have pointed out, it also implies a scary degree of certainty that we don't have. But if we have that certainty, the need for input is less. So it's a Catch-22.

But anxiety vs. "legitimate requests for information" is a false dichotomy to start with -- begging the question, really. The ultimate answer is revealed only through posting more info, iterative tests and visits. What keeps the "discussion quality high" is that we delete what needs to be, close what should be closed, and ban who needs to be.

Given that dx IRL often takes at least two opinions, if we have a more definitive sorting hat here in cyberspace, we should patent it!
 
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affected

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I like the idea of a little weeding in the DIHALS section.
 

Nikki J

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Mods be aware this is posted in public
 

blitzc

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Yes, I'm assuming all the people you listed are not new members, if so, they're able to post and respond. Moreover, those are exactly the people we want responding in these threads.

This process/system was setup intentionally to allow and encourage tenured members to post and respond. Not only that, but to bring attention and promotion to important threads there's a higher response rate, and higher quality of responses. It's also intended to illicit input from a wider variety of our membership through the thread prefixes advertising "Please respond".

David and Mods,

I am obviously not a tenured member, and due to my lack of knowlege and expertise as so many of you posses, I don't post to DIHALS and rarely read these posts. My question is, at what point does a new member move into the "not new members" or "tenured" status? Are there definitive gidelines in place? At some point in time, someone like me may feel they are capable of responding to one of these posts.
Just curious.

Cathy
 

Atsugi

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Hi Blitzc, (nice cat)
That's a really good question. I think the answer could be important. Not sure, tho, what the answer is.

Although the system puts laudatory labels on people and give points for participation, I think that reality is that "not new" is actually a subjective matter.

Personally, I think that if someone feels capable, they can certainly leap in and test the waters. Being inexperienced, tho, they might feel badly when they look a day later and see their answer is criticized or is out in left field. However, that's the best way to learn!

Some will disagree, but I like it when a P/CALS participates in ANY discussion. The mods, although very experienced, certainly can't see a question from every point of view, and can also be wrong.

On the other hand, "for tenured members only" can sometimes be an important distinction. I really don't know how to administer that decision. Others smarter than I will answer, I'm sure.

Remember, Blitz, that this forum exists for YOU. Participate any way you can. And you can always ask a more experienced person for advice at any time.
 
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Atsugi

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This post deleted. Changed my mind.
 

KimT

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David, thank you for addressing the DIHALS issues. I frequently reply to posts there because I know what horror I went through for nearly a year. After my diagnosis I was even more horrified to read my initial posts. They sounded like an anxiety-ridden crazy person. I think we have to tread lightly with new people and, frankly, I've seen initial replies that are much too abrasive for people who are terrified. I'm not talking about the ones who come back for months and years after seeing a neurologist. Tough love has its place here, too. It's just that sometimes it takes more than a few posts and replies to get enough information.

EDIT: Mike deleted the post to which I referred. FWIW, I agreed with him and gave a quite lengthy reason why.
 

KarenNWendyn

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Thinking more about this, my vote would be not to alter the DIHALS forum. It does look confusing and makes one wonder why some threads were selected to go to a more limited forum. I also thinks it unnecessarily complicates things. We’ve always had the rule that DIHALS can’t post in another’s thread. But I think all regular (non-DIHALS) members here have the potential to contribute and I would hate for anyone to feel excluded. It’s up to the mods to edit and weed out any posts that seem inappropriate. And if regular members don’t want to participate in the DIHALS forum, they don’t have to. I like having some rules and regulations up to a point, but if we get too carried away with rules and regulations, I feel this forum could become less user-friendly.
 

David

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I'll not ask P/CALS to "Please Respond," reading as either redundant or an urgent request. They will respond if they see fit. As Karen has pointed out, a number already do.

Edit: Now that I've seen the new labeling in action, I feel even more antipathy toward it. This is like promoted posts popping up, highlighting a particular group (DIHALS) above P/CALS' forums. And as others have pointed out, it also implies a scary degree of certainty that we don't have. But if we have that certainty, the need for input is less. So it's a Catch-22.

But anxiety vs. "legitimate requests for information" is a false dichotomy to start with -- begging the question, really. The ultimate answer is revealed only through posting more info, iterative tests and visits. What keeps the "discussion quality high" is that we delete what needs to be, close what should be closed, and ban who needs to be.

Given that dx IRL often takes at least two opinions, if we have a more definitive sorting hat here in cyberspace, we should patent it!

Okay, I'll remove the "Please respond" thread prefix immediately.

Threads moved to the new sub-category will appear in news feeds, but will not having any special attributes other than:
  • Can be seen in "new post" lists and "what's new" feeds
  • Can only be responded to by tenured members if they so choose to respond
We can also make sure there's always a permanent redirect to and from the two DIHALS categories.

The intention of this community is first and foremost to assist PALS and CALS. The intention is also to build a resource of information and ensure the community and resource stay online and operating in perpetuity. Deleting of content as a regular practice is not acceptable and was originally reserved for spammers, advertisers, bullying, and the like.

I know this area of the site has been problematic. I know people are frustrated and frustrated with change in general.

I'm working on a simple way for members, specifically CALS/PALS, to make this area of the site invisible, so they can focus on the areas of the website that are most important to their day-to-day needs. This area of the site was never intended to be baby sat by moderators or CALS/PALS endlessly, nor was it supposed to detract from our valued memberships' experience - certainly not become a focal point of the community.

My "Please respond" thread prefix is distracting and violates the initial intention of the community. I agree and appreciate the insight - it will be changed immediately.

I'm getting a lot of push back with all changes to the site; there always has been. That's overwhelmingly positive in my eyes. People want whats best for PALS/CALS and what's best for the community.

I sense people are disgruntled at me for recent changes, but I'll continue to work towards resolving some long standing issues, specifically the DIHALS section which has been a burden for a long while. Making these changes was a big priority for me once the launch was completed.

Regarding the current system;

The deletion of content became the current system of dealing with this area of the website. It's also led to massive amount of moderator time and commitment which distracts from CALS/PALS from what I've seen. How could it not if time is being spent in that area of the site deleting content, messaging posters, interactions, etc, when that time could be spent in other important areas of the site.

Deleting content at this frequency was not always how this area was handled and I'm working towards a system that values the preservation of content wherever possible. Deleting of content will not continue to be as pervasive as it's been.

I don't think I explain myself well, and that's on me. But I also feel like I'm treading on thin ice most of the time when I'm just trying my best to make changes that will more adequately address pain points now that we have a better framework and tool-set to do so.

I take in a lot of feedback from a lot of members. I try to talk through things and then make changes, people comment, suggest, complain, we can adjust.

I know the recent changes have been most difficult on the moderator group; it's a lot to take in.
 

David

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David and Mods,

I am obviously not a tenured member, and due to my lack of knowlege and expertise as so many of you posses, I don't post to DIHALS and rarely read these posts. My question is, at what point does a new member move into the "not new members" or "tenured" status? Are there definitive gidelines in place? At some point in time, someone like me may feel they are capable of responding to one of these posts.
Just curious.

Cathy

The system is definitely not a perfect one and hopefully in time a more appropriate system of advancement could be put in place. Currently it's simply based on time and post count.

It's simply to prevent people from registering and immediately giving advice to other new members regarding ALS diagnosis et cetera. As well as ensuring our existing and long serving membership have places to speak privately and on-topic.
 

David

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Hi Blitzc, (nice cat)
That's a really good question. I think the answer could be important. Not sure, tho, what the answer is.

Although the system puts laudatory labels on people and give points for participation, I think that reality is that "not new" is actually a subjective matter.

Personally, I think that if someone feels capable, they can certainly leap in and test the waters. Being inexperienced, tho, they might feel badly when they look a day later and see their answer is criticized or is out in left field. However, that's the best way to learn!

Some will disagree, but I like it when a P/CALS participates in ANY discussion. The mods, although very experienced, certainly can't see a question from every point of view, and can also be wrong.

On the other hand, "for tenured members only" can sometimes be an important distinction. I really don't know how to administer that decision. Others smarter than I will answer, I'm sure.

Remember, Blitz, that this forum exists for YOU. Participate any way you can. And you can always ask a more experienced person for advice at any time.

So much is in the wording. I just chose the word "tenured" over "long time participating members" because it was easier to read. It's simply based on posts. We could adjust this in the future if someone has a better suggestion. It's mostly just to weed out immediately newly registered members which I was told by many was a problem.

If I had my way, everyone could post everywhere and it would be a free for all, like all forums online. Freedom of speech and the rest. But that wouldn't work here for most of us I'm sure. So here we are, trying to walk a fine line. I'm positive we can come up with something, in time, that works for most. I don't expect anything to work for all.

I figure if anyone makes it to 50 or 250 posts without being banned, they're welcome to contribute wherever until such time that engage in truly abusive behavior.
 

David

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Personally, I think that if someone feels capable, they can certainly leap in and test the waters. Being inexperienced, tho, they might feel badly when they look a day later and see their answer is criticized or is out in left field. However, that's the best way to learn!

Some will disagree, but I like it when a P/CALS participates in ANY discussion. The mods, although very experienced, certainly can't see a question from every point of view, and can also be wrong.

I completely agree. I'd like to see more input from a variety as well, but I also know that many have pressing matters to deal with, and that's fine too.

For any that find the back-and-forth in that section exhausting, but difficult to ignore, then a way to "ignore that section" of the website would be helpful. Check the box, set and forget, and the community becomes a community focused solely on PALS/CALS from their browsing perspective.

Member's that don't want to spend their energy on that section won't have to see messages anywhere on the website from that section. Members that do want to participate, won't set that option on and are free to participate.

Win win? Seems good for all.

What am I missing?
 
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