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What's your view on the diabetes online community?

tim2000s

Expert
Retired Moderator
Messages
8,936
Location
London
Type of diabetes
Type 1
Treatment type
Other
As part of the recent EASD conference looking at diabetes research and treatments, a Diabetes Online Community day and a social media summit were run. (I wasn't there - this is just from the reportage from the event).

One of the takeaways from those attending this event was that the diabetes online community isn't inclusive enough and doesn't represent people with type 2 properly, and that those involved in the community should "help" those who wanted to to become more active in the DOC.

As one of the largest mixed diabetes communities, I wanted to gather your thoughts on this, and whether you think that

A) there's an issue here
B) What you'd like to see change
C) Do you want to be involved in Twitter/Instagram or Facebook more heavily?
D) Would you volunteer to be sponsored to attend diabetes conferences?

I'm interested to hear direct from a large, mixed, online community what you think of this.
 
A) not that I’m aware of
B) more mainstream, high level, accurate, education including type difference alongside harmful myth busting but not sure that’s what this is aimed at
C) no thanks
D) yes , love to if it helps

According to the outcomes
What/who are not being included?
How are type 2 not being represented?
 
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A) I don't see any issues.
B) Nothing
C) No
D) Maybe when I am better.
 
Thanks guys, it's really about whether you feel under-represented in the diabetes online community.
 
tim2000s said:
Thanks guys, it's really about whether you feel under-represented in the diabetes online community.
Click to expand...
I get that’s what you are asking us but you also report that the conference surmised we were. Why? What reasons did they give?
 
Our you asking about the Red, Blue or some other on line community?
 
Hello!
A) I don't feel there's any issue. I feel both type 1 and 2 are represented.
B) Hmm, a more universal approach - Surely one method works for the majority, but what about the minority?
C) I'm quite heavily invest in social media like instagram, but not Facebook or twitter but I'm open to get more involved.
D) Yes please!
 
tim2000s said:
Thanks guys, it's really about whether you feel under-represented in the diabetes online community.
Click to expand...
My thinking is that the online community isn’t representative of the Diabetes community as a whole.
 
From my personal experience (though thankfully not recently) there were far more complaints from T1 posters because they felt that their smaller numbers in overall terms meant that T2s were swamping them by sheer numbers.
Not just in online fora, but also in general pressure on the NHS and Government.
Strength in numbers.

Oh, free trip to a conference?
Where do I sign??

tim2000s said:
A) there's an issue here
B) What you'd like to see change
C) Do you want to be involved in Twitter/Instagram or Facebook more heavily?
D) Would you volunteer to be sponsored to attend diabetes conferences?
Click to expand...

A) Not in my experience (although I think T1s often get more involved). I volunteer for some DUK committees and I think there are slightly more T1s in general.

B) Less emphasis on T1 vs T2 in some fora, perhaps? We are learning that there is a lot of commonality between T1 and T2 needs with LADA acting as an obvious bridge.

C) If I did, I would! There is nothing stopping me joining FB groups or taking part in Twitter conversations. I do tends to spend more diabetes related time here because it seems more effective and suitable for my needs.

D) As noted above: YES
 
I feel this site is fine. There are others that don't really seem to cater for T2, but that's why I am here and not there. I was put off initially when I lurked here as a lot of threads weren't relevant to me, but I eventually found 2 that were and started posting on them.
Twitter, Instagram, Facebook? Not interested, they are mostly for quick comments, not pages and pages of threads which progress in time and content.
Conferences? No thanks.
 

Those are both good questions. Again, only from observation, a lot of the more active voices on Twitter appear to be those of people with type 1. I don't know whether that's true of Facebook - I think both T1 and T2 tend to exist in separate worlds on that platform.

Also, at the DOC day, I believe only 3 invites went out to those with T2D. The call was basically for the Diabetes Online Community to be more inclusive of all types, rather than those with T1. For me the question is whether that's really a true representation or whether people exist in their own "bubbles" and therefore miss what's happening elsewhere.
 
tim2000s said:
Also, at the DOC day, I believe only 3 invites went out to those with T2D.
Click to expand...

Out of how many invites in total?
And how many went out to 3cs? And steroid induced? And so on?
And how many were accepted => bums on seats

I figure if the numbers of accepted invites isn’t representative of the proportions of people with different types of D, then you have your answer.
 
I think there are two separate questions. I've no doubt the answer in terms of conference attendance is that it's unrepresentative.

In terms of what the online community does, it's more complex. This is probably the single biggest forum for people with T2. Does that mean the online community is not representative of T2 or just that where people are looking is incorrect?
 
@tim2000s,
I have no clue as to how it is even possible to determine if Diabetes is under-represented online.
So long as forums, especially DCUK can be found by Dr Google then I don't see that there is a problem.
 
I just googled Diabetes online community (doc) and got this as the first relevant hit https://beyondtype1.org/the-diabetes-online-community-doc/

Hardly surprising a lack of type 2 representation when almost all the links provided are to type 1 based groups, either directly or by virtue of being aimed at under 30’s so less commonly type 2. DCUK wasn’t on their list at all.
 
Initially I was confused.
It appears there is “ the Diabetes Online Community” which appears to be a US based organisation. I confess that prior to this I have never heard of it, so have no idea how representative or inclusive it is.

Then there are diabetes online communities, including this one.
 
Hi. I don't understand the problem as this site has always supported the range of diabetes types very well. I see no real need for any change at least to this site. I see no value in adding the social media groups to the online mix; it would merely confuse access to information and trivialise the subject. No, I wouldn't want to be sponsored for a conference
 
A) I don't feel like a second-class diabetic ✻on here✻

B) Bad-tempered and abrasive posters put off visitors ..✻moderate✻ 'em out.

C) This channel is fine for me as it is.

D) I don't volunteer for owt.
 
I imagine that being type 1 tends to happen to younger people who are more likely to be active online.
I think that we are missing the point if we focus on the diversity of type 1, 2, 3 or pre who are active on this forum though if I were vegan or vegetarian I might feel a little in the minority here! However I don't think that particular area should be policed just that we should all listen to and be respectful of, each other views plus open to other options than low carb; echo chambers can make you deaf to alternate views.
To me the bigger problem is that most diabetics are not being supported to make changes in lifestyle (mainly diet) that might make an immense change to their health outcomes. Whether that support is an online forum, walking group or better discussion of the choices at an individual level seems irrelevant to me.
And yes, I'd be up for coming to a conference. I run a walk/talk group for diabetics (t2) and learning about how to make better use of online options beyond our WhatsApp group.
 
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