Challenges and opportunities for improving member experiences on TuDiabetes

Hi all,

As you all know, TuDiabetes recently transitioned to a new, much more flexible platform that can help us to improve our members’ experience on the site. One of the reasons for the transition was that this platform allows us to add new tools to make it easier to find, read, and participate in the discussions. But in order to propose new solutions, we need to better understand the challenges you experienced with TuDiabetes over the years. We are conducting this survey with our friends from Columbia University who investigate ways to improve experience of members of online health communities and will help us to come up with new design ideas for our forum. The researchers, Lena Mamykina and Drashko Nakikj may participate in the discussion as moderators and also ask questions. Please read the Information Sheet about this study. Thank you all and we are very much looking forward to hearing from you!

Here is what we would ask you to do:

Think about the last time you had a really frustrating experience, not because of what somebody said, but because of some difficulties you experienced finding information, or reading and understanding a discussion.

Please answer the following questions about this situation:

What was the context? What were you trying to accomplish? What were the challenges? How typical was that experience (something you encounter often, or was it unusual?)

As you think about your answers to the question above, be open-minded and don’t limit yourselves in the thinking process. We are interested to collect as many different problems and challenges as possible, so please don’t be burdened by the importance of them and what would others think about you having those difficulties. Please, don’t judge other participants’ problems and show respect to everyone’s contribution. However, you are welcome to leverage, modify, or further extend other participant’s contributions. Don’t limit your scope and feel free to go into details when you feel it is necessary. Every single contribution counts, and there are no wrong answers. Feel free to use text, external links, videos, images or sketches to express your thoughts. We encourage the use of the “reply” feature in the discussion when appropriate.

Thank you very much for participating! With your input we can make TuDiabetes a better and better place to connect and spend time.

TuDiabetes & Columbia University Research Team

I could not find specific topics to Gary Scheiner’s video. There are several videos but they are not described in detail as to the contents. I don’t want to waste time looking through videos that are not relevant to what I’m looking for. For example, how do I bolus for pizza?

1 Like

Great feedback, @lh378! What do you think would be the most effective way to structure that information? Just a text description accompanying each video that tells what topics are covered? A searchable menu of topics across all videos? Searchable tags? …?

Yes,both. A description of the video is necessary. Key words or topics in the video. Currently, I do not see a search window for video.
The magnifying glass can also be improved. Search by date, for example, most recent.

1 Like

Personally, I feel the site has become stagnant and irrelevant. Used to look at it several times per day and comment, rarely do that now. Have also lost contact with my friends like Zoe and AR, and so many more. Site is just too clean with the upgrade. The reply part–pix instead of names???, drives me crazy. I truly miss my TU family.

I have left this icon on my toolbar, but open it infrequently. Tu has helped me so much over the years, but is doomed to deletion. What happened?


Hi Sue -

I’m experiencing the same loss. There is just so much less activity and I can’t tell why. I look at items on the first page a few times a day but I neither find friends nor much of interest… Peer groups come and go and maybe ours didn’t survive the transition.

I hope you’re well,



Sue and Maury - I think any community, whether it be students attending the same school program or even an actual neighborhood, evolves and changes. People drop out and new people start to participate. We’ve all heard discussions of long participating members of a community talk about the “good old days.” They reminisce about times that were more important to them or when they were working through difficult issues.

We can’t stop time and all the effect is has on us and those we enjoy spending time with. I guess that’s our challenge here. We can’t recreate what once was but we can discover new friends and new joys. And there’s nothing wrong with dropping out of a community to focus your personal energy in some other social environment. Maybe a face-to-face diabetes support group may make sense for some of us.

I like it here and even with some of the technical challenges, I will continue to show up. But I understand that others may make other choices. Seems life is always about saying goodbye and hello!

Emily - Sorry for the off-topic tangent. I don’t have any examples yet but I will continue to think on it.


the video archive currently does not have a search, but it’s coming. someone correct me if I’m wrong, but Gary Scheiner’s interviews aren’t usually focused on particular topics, so I don’t see a way you could, for example, search his videos for his advice on how to bolus for a pizza.

1 Like

I understand your example, but feel this is different. It seems like a lot of the standard helpful members “dropped out” when we went to this new platform. That, in itself, tells us that it is likely the platform causing the change, not the people.

And Maury, you are soo right. I rarely even open a topic anymore.


I’m still around. If anything, I had “dropped out” a bit beforehand as I have been spending more time on FB these days. I didn’t sign up for that until 2009 however I “outed” myself with some D-connections there (including several of my buddies from here…), many of whom I was fortunate enough to meet IRL at the 2013 ADA Scientific Conference in Chicago and more recently at the Diabetes Unconference in March of this year. It doesn’t mean that I’m gone from here but I still mostly scan quickly for a topic I think I might be able to be helpful with and sometimes it works and sometimes it doesn’t. I suppose I sort of blew off the transition and the threads griping about things because I figured that, as has happened, things would fall into place.

I like that it kicks the “replies” to individual posts down to the end of the thread as it keeps the thread moving. Some of the interesting topics would fall apart as there’d be 20 pages of thread with dialogues on page 6, page 12 and a flamewar on page 18 which would be continued on page 20.


Yes–that was the worst thing about the old site. Half the time you couldn’t tell who was replying to whom because the particular comment and reply might be pages apart. I prefer the new format vastly over the old one.

As regards dropoffs, I think the login frustrations that persisted for quite a while after roll-out did a lot of damage. I continue to find answers to questions and things I want to respond to here, though, and I continue to find it a friendly environment, so I expect to keep dropping in.


A number of active members didn’t make the move. I think many just gave up due to the site being unusable for so long. This changed the character of the site immediately.

I miss the fact that you can only use your login names and people lost their preferred nicknames. I can understand why Zoe didn’t want to be zoe16 or whatever her login was. It’s not quite as welcoming in an odd way.

I think the fact that members had a page to extensively customize, post photos, videos, manifestos, bios etc. helped build community, you could look at a members page and get more of an idea of who they were and something of their life beyond diabetes.

Lots to like about the new site, but the topics discussed have changed and like @still_young_at_heart I find less of interest. By the way I understand that referring to Maurie as @still_young_at_heart makes the site work better but it is more impersonal.

A site like this is always evolving as some drop out and others with different interests take their places. Change is the only constant.


It’s a shame that we have lost members. I have a manufacturing background and I’m always looking for the “root cause” of the problem and a PCA (permanent corrective action). Yes, we have gone through a lot of growing pains. Unfortunately, they were necessary. I’d like to suggest a membership drive/campaign. Maybe we could brainstorm with a group of TuD members and come up with several ways to reach out to new potential members.

Sarah :four_leaf_clover:


This was a big point that Zoe complained about. Early on after the transition I was trying to learn some of the “new ways” and addressed Zoe as @Zoe and she was offended. I still hesitate to use that format to this day but Zoe has dropped out. She was a very active participant up until the transition and I enjoyed her comments, as many did.

Sue - you’re right that many people fell away at the transition. My point was not to argue that reality.

Maybe our continued engagement can bring back a few of those if they check back in and find that the login woes are gone while the content is still TuD friendly and useful. My main point still holds. Change happens; if we don’t adjust then some places in the world will go on without us.

1 Like

But how many is many, out of like 33K members, now we have 20 some-oddK members now but how many of the casualties were, like @Zoe members who hung out vs. members who’s ID’s were churned off by getting rid of folks who were not active, had emails or whatever. I miss Zoe too, a lot, I liked her perspectives and thought that she was a good voice for diversity in the community but, if she wants to go hang out somewhere else, well, it’s a free country. If she wants to come back and pops up in a thread, I will still try to talk about what she says the same way I always do, uh, half-baked? I like to use the @ as it seems to notify me so I figure that other people want the notifications. Perhaps it has an element of cheese but I’ve also been occasionally distracted by twitter lately and can deal with that too.

1 Like

I am so glad that this conversation is happening! Thank you guys for participating in it. We at Diabetes Hands Foundation have, of course, also noticed the loss of some previously very active members since the site migration, and how their absence affects the community as a whole. We miss them, too!

I’m going to start an offshoot from this conversation so we can keep it going, and I would LOVE any ideas you guys have about ways in which we can encourage our old friends whom we haven’t seen in a while to come back and visit, and also generally how we can create a cozier, more connected feeling here on the new site.

On this thread please do continue to think about the last time you had a really frustrating experience, not because of what somebody said, but because of some difficulties you experienced finding information, or reading and understanding a discussion, and answer the questions:

What was the context? What were you trying to accomplish? What were the challenges? How typical was that experience (something you encounter often, or was it unusual?)

1 Like

When I scan my computer it causes me to get logged out from all my sites, including TuD.
I find I can’t log back in, I have several tries and eventually give up and look through the site for interesting conversations, then I go back and try to log in. Bingo, it works. I know I am using the correct login and password.

1 Like

Hi all. I haven’t checked on here for awhile, but got an e-mail notification as my name was mentioned. I found myself smiling when I saw familiar names and heard I was missed. I haven’t “Left” technically, just . as Maurie and Sue described when I sign on, nothing seems to grab my interest. I can’t say as I had/have specific technical problems and was able to sign on pretty early after the transition. I just don’t find the new site appealing or inviting. I don’t know how to explain it, it just looks like a list of subjects not an actual (cyber) place. It feels like information not connection. Like all of you are saying, maybe things just have their own time and place and for me that time has passed. It does make me sad as this site has meant so much to me over the years. But if I have to remind myself to sign on then it obviously isn’t meeting a need anymore. As those of you who know me have heard me say many times I strive to keep my life such that my D is well controlled but it doesn’t dominate. Perhaps not spending as much time on here is, for me, part of that. But I’ll sign on now and then and if anyone wants to chat about something do e-mail me. I assume you get notices for that, or I’ll just check it now and then. You used to not be able to type your regular e-mail but I’ll try it anyway: zoelula2@gmail. I left out the dotcom at the end. I wish you all well.Zoe


The gray top banners on the Home page should look exactly like the one on the top of the one on the forum page (and anywhere else). Yesterday I was chatting with someone on the home page, and it was clear she didn’t know how to access the forums. I tried to explain, “click the little symbol that looks like 2 cartoon clouds” - I was not successful. I wanted to be able to say “click on ‘forum’ on the top gray banner”

1 Like

First they disappeared then reappeared with no words, the interface needs to be understandable to non techies and folks who are brand new to the site. It needs to be easily understandable that there is more to tuD than Chat.