Improving TuDiabetes; we need your feedback!

TuDiabetes Website
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Since the beginning of the year we at Diabetes Hands Foundation have been working with a highly experienced marketing professional named Chris Stiehl, who has generously donated his expertise to help us identify and meet the needs of our community. With Chris' guidance we have conducted one-on-one interviews with members of TuDiabetes and it's Spanish sister site, EsTuDiabetes, in an effort to identify and better meet your wants and needs.

We aimed for diversity. Folks interviewed included people with different types of diabetes, of different ages, with children who have diabetes, folks from different places and backgrounds, etc.

From that interview process we created a long list of needs expressed by community members, and then we conducted a focus group comprised of other members to sort and organize those specific needs into broader categories. The goal of this exercise was to help us understand the general topics represented, from the perspective of TuDiabetes members.


Focus group hard at work!

This was a lengthy and challenging process for our very generous volunteer focus group, and out of that process we came up with this list of general needs that our community members have expressed:


I need:

  • a community that understands my emotions
  • a community where all opinions are respected
  • a trusted resource for information about diabetes
  • a community guided by an organization (Diabetes Hands Foundation) that has a positive attitude
  • a community where the information I share is secure
  • a community where I feel I belong


The next step in this process is to get your feedback! Do you have wants and needs from this community that do not fit within any of the categories listed above? If so, please write them in the thread below!

Soon we will send out a community-wide survey, specifically asking each of you how important each of these needs is to you, personally, and how well you think we are meeting them. From your responses we will better be able to target our efforts to ensure that the wants and needs you have expressed are met to the best of our ability on the TuDiabetes site.

There may be some needs that we decide not to focus on meeting because they are outside of our scope or ability, or are at odds with our goals as an organization. Examples would be if some of you expressed a need for Diabetes Hands Foundation to pay your medical bills, or talk to your medical provider.

Please keep your eyes pealed for that survey, and fill it out when you see it! Using the responses to that survey, we will be able to make TuDiabetes an even better, stronger and more useful resource for you, our members.

Thank you for joining us in this exciting and important process!

Changing the Forum
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We are only starting to analyze what we have learned so far. Your help and assistance is critical. The whole staff, and my wife Lorraine, have helped tremendously. Thank you in advance for your thoughts on this.

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I am not getting much. I am a type 2 for 46 years. I got my Diabetes from Agent Orange in Vietnam. I have lost my hips, knees, stomach, had eye trouble and much more. I am now losing my Pancreas. I have been on Glucagon in my pump for 2 years. I have to put in fresh every 3 days.
I see, hear, get nothing on TuDiabetes about this or much on Type2’s?
I feel they are to wrapped up on Type1 and nothing else.

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I think there is a very fair balance in the community between types 1 and 2. I am proud of the way it has grown over the years and I remain very excited about the future. I agree with each of the statements listed above.

I do wish to offer two additional wants, not needs. I would like for the platform to be more MAC friendly. Now that is sort of strange coming from me because up until this time I have always publicly supported using NING. I no longer do so. Not because of anything in the community rather because of the limitations it places on using MACS.

Second, I would so like to see better cross discussion searches made available. I think we have a treasure trove of information that folks continue to recreate. Yes some of it is original but much of what we do and talk about has already been discussed. Nothing wrong with asking new questions. It is however a great feeling when Marie says oh hey look at this or that for information. The trouble is there is only one Marie and I know I dont, and I doubt others know what she has already forgotten.

A better cross discussion search will make TUDiabetes be a better resource in my opinion.

rick

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Great! You’ve identified all. Wonderful work that you do.

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i joined another site before which was not as good as tudiabetes & when i discovered this site by accident i quit the other one
i love tudiabetes
it is just wonderful

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Maintaining a polite community to exchange information is an admirable goal, common to many sites that allow community input. My wish would be that more easily accessible, quantifiable, comparative data can be compiled from the community to allow decisions to be made from an unemotional, economic basis in order for me to control the disease, not have the disease control me. Examples: test strip costs, pump costs, insurance costs. Not sure how this can be done without turning “TD” into a “consumer rights” charitable org., but then, maybe there’s a different sight for that out there?

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Randall, please realize that for those with type 1 diabetes, there are FAR fewer resources than there are for those with type 2. When I look at sites for those with diabetes, there are at least twice as many sites for those who fit that criteria (hands down) than there are for those of us who fit into the criteria for type 1. I could go on and on about how angry it makes me, but what good will that do anyone? What you need to do is search specifically for those groups that have what you are specifically looking for instead of making any of the groups cater to what you want. Sorry–just my thoughts on the subject.

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A community that promotes education about diabetes. The public needs so much to be informed of the truths involved. DOWN with the myths that prevail, and UP with the truths that the public needs to know. Many diabetics don't yet know so many things that would help them to have better control.

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I really like the connection with other type 1 parents. I have a 6 yr old who was diagnosed at 3.5 yrs. We started the pump in August and the CGM in April. Life is changing all the time. I just recently got a recommendation on how my little guy can wear a CGM and a pump comfortably at the same time! I love the ability to connect with parents all over the world:)

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You have struck an interest in me and I would love to learn more about your strategy. That is why this site is sooooooo important, even as we all engage in different strategies in caring for our diabetes. We, personally, are vegan and follow Dr. Neal Barnard's suggestions and have had little support in the mainstream. I understand completely how you feel in terms of the mainstream. But, I also feel reassured knowing that other individuals whom have diabetes also follow this strategy; that is what this site provides. Otherwise, I feel alone. Even though I do not have a lot of interaction with the group's members, I know they are out there, giving me just enough encouragement to keep on, keeping on. Tu Diabetes fantastic job. You are doing exactly what you set out to do.

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I'd say that Dante is extremely fortunate to be able to get by with basal and no bolus insulin and really great results! I've had T1 since 1984 and have been online since 2008 and think that's probably the exception rather than a rule or something people will go for.

I agree that I'd like to see more "prime time" events to give folks who are at work a chance to participate in various interesting things @ Tu. I have a lot of PTO so, occasionally I've had days off and am not travelling and can make it and it's fun to kibbitz with people but I've missed a lot of neat events.

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I think spreading the interviews and live chats more over the day could work out better indeed. right now only a small part of our community can attend, and for me the time around 1pm PST works actually great, but i also know that most of you guys are at work or school at that time, and i think those valuable interviews should be made accessible to more people.

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I am not seeing much about the site itself. So, let me get into big trouble and give my 2 cents.
1. The lack of a good site search engine is a major flaw for me. It is difficult to find threads that quickly leave the home page when you have a thought you want to add the next day. I know you can search your own name if you have contributed but if not, you are "tough out of luck."
2. This is where I get into trouble. We are asked to contribute to the site but really, it is very difficult to contribute to tudiabetes because it goes to the Db Hands Foundation. I have viewed the DHF website and still don't know what it does. Actually, I don't like donating to a charity that I don't understand or necessarily think is more important than the dozen other charities I contribute to. The goals are vague and no list of actual accomplishments is available (haven't looked in 6 months). I would like to contribute to the actual tudiabetes site. I have mentioned this to admin in the past and it appears that they would reluctantly agree to a separation of my small contribution but it seems like it would be more trouble than they really want to go through. The DHF mission is: "To connect, engage, and empower people touched by diabetes." Sorry, but that is like saying "we want people to be happy."
You can yell at me all you want but you asked. I am ok leaving the forum if I am asked to or if any three people suggest it. Though I must say that the tudiabetes forum itself is the best online. I will regret leaving but I just can't hold those thoughts in anymore.

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Great feedback, Rick! So you know, improving the search function is very high on our list of important technical changes to the site. We're working on it!

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And we love you, Shosh :)

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rblcpacfo, would you mind elaborating on this idea? I would like to understand it better. Feel free to do it here, or write me a personal message about it if you prefer. Thanks!

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As the community manager, I really welcome this feedback, Randall. We try to get a good balance of information and representation for and from members with different types of diabetes, but I agree with you that we don't always achieve it. If you have any ideas about how we can be more helpful and welcoming to members with type 2 I would love for you to share them with me :)

In the meantime, I invite you to check out some of our type 2-specific sections of the site. I hope they will be useful to you! Type 2 Diabetes Forum groups for people with type 2 resource page for people with type 2

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Thank you, Kj! I'm really glad you are finding the support you need here :)

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Good points, Lessil :) I have been scheduling the live events at the same days and times every week so that people can plan them into their schedules, but of course for lots of people that means they CAN'T plan them into their schedule! Sounds like I need to re-think that, and maybe host events at different times of day.

Regarding the "go with the flow" point: this is a really tricky one for us, for a variety of reasons which I won't innumerate here. But, I will say that within the context of careful supervision by a medical team we strive to set a tone that is supportive of whatever strategies help people with diabetes stay healthy. The fear is always, of course, that people could harm themselves in their efforts to implement strategies that are outside the mainstream care regimen, so the challenge is to balance the community's desire to support each other in being safe and healthy with the desire to be open-minded and welcoming to new/different ideas. What I understand from your comment is that from your perspective we have yet to strike a perfect balance there, and that's good for me to know!

I'm glad your son is thriving!!