MRF wants your opinion!

The chat regulars initially were in chat as a time to connect with other patients, not always having to focus on their common denominator (the elephant in the room). Melanoma was always the subject when someone came in and wanted to speak about it or had questions. Chatting about Melanoma can be really hard so regulars would chime in with other topic once in awhile. Chat participants ALWAYS made sure someone was addressing Melanoma questions and sharing information.  

Cliques, whining about cliques from people that never participated or helped in chat, bad behavior, and drama changed the flow of chat and chased people away. The new format is great, helps to ensure the drama stays low. It seems to have chasedaway the people that went in for the daily banter.

It can't be serious all the time, Your questions show that isn't understood by the MRF. The current format isn't as user friendly. Part of the success of the last chatroom was the ability to get into the chat area easly and READ it. It was big and clear. Now you have to go through several clicks to even find the chatroom, more clicks to get in.

No easy answer but appreciate your acknowledging the issues and trying.

The chat regulars initially were in chat as a time to connect with other patients, not always having to focus on their common denominator (the elephant in the room). Melanoma was always the subject when someone came in and wanted to speak about it or had questions. Chatting about Melanoma can be really hard so regulars would chime in with other topic once in awhile. Chat participants ALWAYS made sure someone was addressing Melanoma questions and sharing information.  

Cliques, whining about cliques from people that never participated or helped in chat, bad behavior, and drama changed the flow of chat and chased people away. The new format is great, helps to ensure the drama stays low. It seems to have chasedaway the people that went in for the daily banter.

It can't be serious all the time, Your questions show that isn't understood by the MRF. The current format isn't as user friendly. Part of the success of the last chatroom was the ability to get into the chat area easly and READ it. It was big and clear. Now you have to go through several clicks to even find the chatroom, more clicks to get in.

No easy answer but appreciate your acknowledging the issues and trying.

I'm of a different opinion.  The new format and the rushed introduction caused many to stop visiting here.

The bulletin board format is awkward at the best.  Their is no way to tell which posts you've read in a thread.  Yes you see the # of new replies but not necessarily which are new.  The old format you always knew.

The amount of posts in the bulletin board and the off-topic are the lowest I've seen since I've been visiting here.

The chat room was so difficult entering many folks are just staying away now. 

The MRF in it's effort to "sanitize" the community by rushing the changes with (in my opinion) a web design firm that apparently had very little experience integrating from one format to another has damaged the community.  Again, my opinion, but it will take a couple of years to regrow with new users. Unfortunately, there are more being added every day.

Per some recent advice I have decided to post this on the off-topic bulletin board as well…

"We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:"

As I've mentioned our opinions about thriving are silk purse or sow's ear

1.  What would make YOU go into the chat room?

Interesting people using it.  Also, an entry that does not go so fast that you can't regularly open the chat in a pop up.

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

no, we have participants from all over the world.  who do we schedule for.

3.  If so, what topics would you want to chat about?

N /A it should be free wheeling

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

N/A

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

N/A

We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

Sincerely,

Shelby Moneer, MRF Health Educator

As I've mentioned many times, perhaps to Tim's chagrin it's a pretty website with a pretty but antiseptic community. I only come here because I have some experiences that may help others, but I don't post a tenth of what I did before the changes in format and the changes in participation.

Jerry from Cape Cod

I'm of a different opinion.  The new format and the rushed introduction caused many to stop visiting here.

The bulletin board format is awkward at the best.  Their is no way to tell which posts you've read in a thread.  Yes you see the # of new replies but not necessarily which are new.  The old format you always knew.

The amount of posts in the bulletin board and the off-topic are the lowest I've seen since I've been visiting here.

The chat room was so difficult entering many folks are just staying away now. 

The MRF in it's effort to "sanitize" the community by rushing the changes with (in my opinion) a web design firm that apparently had very little experience integrating from one format to another has damaged the community.  Again, my opinion, but it will take a couple of years to regrow with new users. Unfortunately, there are more being added every day.

Per some recent advice I have decided to post this on the off-topic bulletin board as well…

"We at the MRF are trying our very best to increase membership and conversation on the bulletin board and on chat.  The bulletin board seems to be thriving, but unfortunately, the chat room is not…to say the least.  So, here are my questions to you:"

As I've mentioned our opinions about thriving are silk purse or sow's ear

1.  What would make YOU go into the chat room?

Interesting people using it.  Also, an entry that does not go so fast that you can't regularly open the chat in a pop up.

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

no, we have participants from all over the world.  who do we schedule for.

3.  If so, what topics would you want to chat about?

N /A it should be free wheeling

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

N/A

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

N/A

We thank you so much for taking the time to help improve our online community!  Your opinions are very important to us and will not only help you, but also future members of our online community!

Sincerely,

Shelby Moneer, MRF Health Educator

As I've mentioned many times, perhaps to Tim's chagrin it's a pretty website with a pretty but antiseptic community. I only come here because I have some experiences that may help others, but I don't post a tenth of what I did before the changes in format and the changes in participation.

Jerry from Cape Cod

Hi, Shelby!

I've been coming to the MPIP website for eons – actually, for at least 6 or more years… like others, I really yearn and miss the 'good old days,' but we all know we can never go back.

With that being said, perhaps the OTBB isn't even really needed on this website?  If you want people to talk about subjects other than mm, then it should be wide-open.  Of course, that is what the DS was and we see how some people liked that 😉  Therefore, perhaps this website should just be melanoma related.

As far as chat goes, I've never been there (just no interest), but I might visit if there were certain topics and/or 'hosts,' so-to-speak.  For example, have a derm host it at a certain time, geared towards Stage I patients (or II, etc…)  Another time, have a nutritionist as a host to talk about diet and cancer.  Question/answer sessions with people would be great!

Thanks for it all,

Cynthia

Hi, Shelby!

I've been coming to the MPIP website for eons – actually, for at least 6 or more years… like others, I really yearn and miss the 'good old days,' but we all know we can never go back.

With that being said, perhaps the OTBB isn't even really needed on this website?  If you want people to talk about subjects other than mm, then it should be wide-open.  Of course, that is what the DS was and we see how some people liked that 😉  Therefore, perhaps this website should just be melanoma related.

As far as chat goes, I've never been there (just no interest), but I might visit if there were certain topics and/or 'hosts,' so-to-speak.  For example, have a derm host it at a certain time, geared towards Stage I patients (or II, etc…)  Another time, have a nutritionist as a host to talk about diet and cancer.  Question/answer sessions with people would be great!

Thanks for it all,

Cynthia

I'll be a bit of a stick in the mud about scheduled chat with topics and a moderator.  Have you thought about the mechanics of such an arrangement?  It's hard enough to follow 4 or 5 people in there and the posts jump so quickly.  Can you imagine 10 or more.  You would never be able to keep up with the relevant comments from the host/moderator.

I think schedule topics work fine for webcasts and conference calls otherwise a chat conference is a waste UNLESS you have a system that keeps the host/moderators comments on a separate window on the page so one can follow the flow, otherwise the questions and comments from the open chat would swamp the screen.

As far as scheduled open chat with a moderator it might work for new visitors.

As others have said there are other communication venues available and many have settled in and found a voice.  Some of us will stick around, but it looks like the real resourses that made MPIP have drifted off to other venues.. 

In a few years this will bounce back.  It might be faster if we could return to a form of the older system which was far more user friendly.

Just calling like I see it, I don't have a dog in the race.  The existance of this site won't make a difference in my specific treatement or my future.  I will find satisfaction finding other places to help folks with the knowledge I have gathered over my history with mel.

Jerry from Cape Cod

I'll be a bit of a stick in the mud about scheduled chat with topics and a moderator.  Have you thought about the mechanics of such an arrangement?  It's hard enough to follow 4 or 5 people in there and the posts jump so quickly.  Can you imagine 10 or more.  You would never be able to keep up with the relevant comments from the host/moderator.

I think schedule topics work fine for webcasts and conference calls otherwise a chat conference is a waste UNLESS you have a system that keeps the host/moderators comments on a separate window on the page so one can follow the flow, otherwise the questions and comments from the open chat would swamp the screen.

As far as scheduled open chat with a moderator it might work for new visitors.

As others have said there are other communication venues available and many have settled in and found a voice.  Some of us will stick around, but it looks like the real resourses that made MPIP have drifted off to other venues.. 

In a few years this will bounce back.  It might be faster if we could return to a form of the older system which was far more user friendly.

Just calling like I see it, I don't have a dog in the race.  The existance of this site won't make a difference in my specific treatement or my future.  I will find satisfaction finding other places to help folks with the knowledge I have gathered over my history with mel.

Jerry from Cape Cod

I used to be a chat regular.  I never go in there now. 

I use a netbook and with all the LARGE menu headers (that should collapse but don't), I have to scroll to see if someone is in the chat room.  It never happens.  Somehow, it needs to be OBVIOUS and EASY.  It's neither right now.  It is so integrated into the side menu that it doesn't stand out.  I forget it is even there.  I also cannot open it up in a popup as intended.  That restricts me from multitasking which I also did regularly while in chat.  I also can't see the status window when I'm posting a reply like I'm doing right now.   It used to be that I could see the chat status even when replying on the BB.  If someone popped in by themselves, I could jump in to chat and respond immediately, then post my BB reply later or simultaneously if chat is in a popup. 

Scheduled chats?  Maybe.  Nice on occasion if it is well publicized.  But that isn't what will keep the chat room going and vibrant.

The new bulletin board format is not as friendly.  I contributed a lot of ideas prior to it being built, but it didn't quite turn out as I had hoped.  Again, too much clicking and scrolling to be overly friendly.  I find myself bypassing the site more and more and only looking at the first 2 or 3 topics because that's all I can see without a lot of scrolling.  I used to post FREQUENTLY.

You find many people who come here are NOT computer literate.  They are newly diagnosed and forced to figure out the computer, the internet, and how best to search for answers all during a very stressful time.  Count the clicks it takes to post on the BB or enter chat.  My advice is to make it LESS clicks and more obvious.

Janner

I used to be a chat regular.  I never go in there now. 

I use a netbook and with all the LARGE menu headers (that should collapse but don't), I have to scroll to see if someone is in the chat room.  It never happens.  Somehow, it needs to be OBVIOUS and EASY.  It's neither right now.  It is so integrated into the side menu that it doesn't stand out.  I forget it is even there.  I also cannot open it up in a popup as intended.  That restricts me from multitasking which I also did regularly while in chat.  I also can't see the status window when I'm posting a reply like I'm doing right now.   It used to be that I could see the chat status even when replying on the BB.  If someone popped in by themselves, I could jump in to chat and respond immediately, then post my BB reply later or simultaneously if chat is in a popup. 

Scheduled chats?  Maybe.  Nice on occasion if it is well publicized.  But that isn't what will keep the chat room going and vibrant.

The new bulletin board format is not as friendly.  I contributed a lot of ideas prior to it being built, but it didn't quite turn out as I had hoped.  Again, too much clicking and scrolling to be overly friendly.  I find myself bypassing the site more and more and only looking at the first 2 or 3 topics because that's all I can see without a lot of scrolling.  I used to post FREQUENTLY.

You find many people who come here are NOT computer literate.  They are newly diagnosed and forced to figure out the computer, the internet, and how best to search for answers all during a very stressful time.  Count the clicks it takes to post on the BB or enter chat.  My advice is to make it LESS clicks and more obvious.

Janner

There is one other thing about chat. Jerry (from Fauq) would often just hang out there, so if a newcomer showed up, there was someone there. And the oldtimers might stop by to say Hi. So it wasn't just a vacant room all the time, like it is now. I think that was very helpful, and don't know if you guys at MRF realized how generous he was with his time.

So, two things. One – there needs to be someone logged into chat, especially in the evenings, for the benefit of newcomers especially. Often newbies show up looking to connect with others, and find a warm community waiting for them.

And two – maybe the fact that there IS a chat room needs to be more heavily featured on the first page. Let people know that if they need answers, or just to connect personally with someone else in a similar boat, then Chat is just waiting for them. Make it easy to get into.

And maybe promote a Chat Party, or some such, at a certain day and time to encourage everyone to check it out.

Also, those of us who are interested in maintaining the comaraderie need to get off our duffs and show up to provide some support. If you're just checking the posts, log in to Chat while you're here. MRF can't make it all happen, even though they did undo a lot of the personality of the thing.

There is one other thing about chat. Jerry (from Fauq) would often just hang out there, so if a newcomer showed up, there was someone there. And the oldtimers might stop by to say Hi. So it wasn't just a vacant room all the time, like it is now. I think that was very helpful, and don't know if you guys at MRF realized how generous he was with his time.

So, two things. One – there needs to be someone logged into chat, especially in the evenings, for the benefit of newcomers especially. Often newbies show up looking to connect with others, and find a warm community waiting for them.

And two – maybe the fact that there IS a chat room needs to be more heavily featured on the first page. Let people know that if they need answers, or just to connect personally with someone else in a similar boat, then Chat is just waiting for them. Make it easy to get into.

And maybe promote a Chat Party, or some such, at a certain day and time to encourage everyone to check it out.

Also, those of us who are interested in maintaining the comaraderie need to get off our duffs and show up to provide some support. If you're just checking the posts, log in to Chat while you're here. MRF can't make it all happen, even though they did undo a lot of the personality of the thing.

I agree with Jerry, this place might look pretty but it's frustratingly sterile and cumbersome  – hardly desirable features on a cancer board. But I really am am fed up complaining about it – wrote in suggestions and posted here, but nothing significant improves. . ( yes we have spell ck and can post pics, but the problems run far deeper than that.)  We attract  people from all walks of life, some who may be turning to the internet for the first time ( such people do exist, and they do get cancer). Too much up front info is worse than not enough for someone like that – just look around you, this site is on steroids (no offence to anyone on steroids).  And loosing the ability to change the subject and convey pertinent information within a thread (or ask questions and draw people in with similar experiences)  is nothing short of a travesty.  In your zeal to fix a 'problem' you have thrown the baby out with the bath water. I'm sorry if this sounds angry,  I just feel so frustrated by your everything is going fine attitude when I feel it is not.     linda

I agree with Jerry, this place might look pretty but it's frustratingly sterile and cumbersome  – hardly desirable features on a cancer board. But I really am am fed up complaining about it – wrote in suggestions and posted here, but nothing significant improves. . ( yes we have spell ck and can post pics, but the problems run far deeper than that.)  We attract  people from all walks of life, some who may be turning to the internet for the first time ( such people do exist, and they do get cancer). Too much up front info is worse than not enough for someone like that – just look around you, this site is on steroids (no offence to anyone on steroids).  And loosing the ability to change the subject and convey pertinent information within a thread (or ask questions and draw people in with similar experiences)  is nothing short of a travesty.  In your zeal to fix a 'problem' you have thrown the baby out with the bath water. I'm sorry if this sounds angry,  I just feel so frustrated by your everything is going fine attitude when I feel it is not.     linda

1.  What would make YOU go into the chat room?   If it were easier to use, certain people were not directing traffic-  admonishing others in the room where to direct their attention, what their conversation should be , demanding you sit at the ready while people decided what they wanted to type and the insistance that there be ONLY one "conversation" at a time going on—just generally sucking the joy out of every moment 🙂

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Yes, depending on the atmosphere—created by the participants.

3.  If so, what topics would you want to chat about?  You pay the bills– you get to decide.

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Your choice, but the board is where we hear from patients and caregivers,,,, so maybe something new and informative- doctors, researchers, Tim .

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc?. Maybe once or twice  month would be something to look forward to …and the info posted where people could see it…although, the pages are so darn crowded I get an ADHD headache every time I log on- overwhelmed.

Chat WAS manned (by multiple patients )  most nights of the week…. I remember from 2002 until late 2008- maybe very early 2009. The chat usually had all stages represented — caregivers and patients.  Now? Zero. The  recent board glitches and the dry consultation room atmosphere brought it to a halt. There has to be a social component to keep those who are well enough to commit their time to the project ( and it was a volunteer project for many of us).  

1.  What would make YOU go into the chat room?   If it were easier to use, certain people were not directing traffic-  admonishing others in the room where to direct their attention, what their conversation should be , demanding you sit at the ready while people decided what they wanted to type and the insistance that there be ONLY one "conversation" at a time going on—just generally sucking the joy out of every moment 🙂

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics? Yes, depending on the atmosphere—created by the participants.

3.  If so, what topics would you want to chat about?  You pay the bills– you get to decide.

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??  Your choice, but the board is where we hear from patients and caregivers,,,, so maybe something new and informative- doctors, researchers, Tim .

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc?. Maybe once or twice  month would be something to look forward to …and the info posted where people could see it…although, the pages are so darn crowded I get an ADHD headache every time I log on- overwhelmed.

Chat WAS manned (by multiple patients )  most nights of the week…. I remember from 2002 until late 2008- maybe very early 2009. The chat usually had all stages represented — caregivers and patients.  Now? Zero. The  recent board glitches and the dry consultation room atmosphere brought it to a halt. There has to be a social component to keep those who are well enough to commit their time to the project ( and it was a volunteer project for many of us).  

 Well, I'm not a trouble maker, but, I can't help but feel that this site discriminates against muslims and latinos.  One useful addition would be a moderator who can translate for them.  They get melanoma too.

 Well, I'm not a trouble maker, but, I can't help but feel that this site discriminates against muslims and latinos.  One useful addition would be a moderator who can translate for them.  They get melanoma too.

1.  What would make YOU go into the chat room?

…. *still thinking*…. nope. I got nothin'

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

Possibly. Unlikely due to time difference, but I MIGHT read a transcript of something that interested me

3.  If so, what topics would you want to chat about?

Cocktails and cocktail recipes, and the current drink of choice (as I previously used to go in there for)

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

Anyone who knows any mean cocktails they'd like to share.

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

Cocktails? Daily for sure. Anything else… probably monthly.

Speaking of which- 90 mins til cocktail hour here. Woohoo. I'm on the count down. See? People DO think about things other than melanoma!!  😀

1.  What would make YOU go into the chat room?

…. *still thinking*…. nope. I got nothin'

2.  Would you drop in the chat room if we had scheduled guests chatting about various topics?

Possibly. Unlikely due to time difference, but I MIGHT read a transcript of something that interested me

3.  If so, what topics would you want to chat about?

Cocktails and cocktail recipes, and the current drink of choice (as I previously used to go in there for)

4.  If so, who would you want to hear from?  Docs, patients, caregivers, Tim (our Director), etc.??

Anyone who knows any mean cocktails they'd like to share.

5.  If so, how often would you like to see scheduled chats?  Once/month, twice/month, every week, etc.??

Cocktails? Daily for sure. Anything else… probably monthly.

Speaking of which- 90 mins til cocktail hour here. Woohoo. I'm on the count down. See? People DO think about things other than melanoma!!  😀

My two cents:

1. What woud make YOU go into the chat room?

Bring back the old format

2. Would you drop in the chat room if we had scheduled guests chattingh about various topics?

If the topic was interesting enough.

3. If so what would you want to chat about?

Treatments having success, new information on treatments, new stats, clinical trial information (it is what I always felt was the MOST important information here.)

4. Anyone with knowledge on the topic.

5. It would depend on how interesting the topic was and how knowledgeable  the speaker was.

Oh..and BRING BACK THE OLD FORMAT!!!!!!!!!

My two cents:

1. What woud make YOU go into the chat room?

Bring back the old format

2. Would you drop in the chat room if we had scheduled guests chattingh about various topics?

If the topic was interesting enough.

3. If so what would you want to chat about?

Treatments having success, new information on treatments, new stats, clinical trial information (it is what I always felt was the MOST important information here.)

4. Anyone with knowledge on the topic.

5. It would depend on how interesting the topic was and how knowledgeable  the speaker was.

Oh..and BRING BACK THE OLD FORMAT!!!!!!!!!

mny two or three cents on Chat and stuff in general.  I have not been in chat very much in the past, as I just did not know too many of the people.  Some of course I knew and would join if I recognized a name.  had some lovely chats with Jerry and mostly just about things in general.  Dian also always is a patient lady… of course everyone here is great for that as well.

I don't go on the computer past 6:00 pm. here, as I am far too tired to do so, and prob wrapped up in TV or most likely just snoozing away. With time diff (like Nic from Oz)  though my time is EST so not near as bad as others in the world.  I miss the old board, in as much as it kept me feeling like I belonged and not just to a melanoma world.

mny two or three cents on Chat and stuff in general.  I have not been in chat very much in the past, as I just did not know too many of the people.  Some of course I knew and would join if I recognized a name.  had some lovely chats with Jerry and mostly just about things in general.  Dian also always is a patient lady… of course everyone here is great for that as well.

I don't go on the computer past 6:00 pm. here, as I am far too tired to do so, and prob wrapped up in TV or most likely just snoozing away. With time diff (like Nic from Oz)  though my time is EST so not near as bad as others in the world.  I miss the old board, in as much as it kept me feeling like I belonged and not just to a melanoma world.