What's your view on the diabetes online community?

[vic hill]

what my view on online community heck that a very tough one and is best done by each case
some give far to much information which does not always correct give the readers the correct story some are spot on and some it would be very very difficult to help always ref every one back to a nurse /a doctor or if it is social/health to a group .
grant in my pic is my mum and the home i stayed in 1958/61 my son got me an a visit on19 sep i called in the memories came back now 650 pupils attend this as a private school but i still new the rooms
vic

 

[ickihun]

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?

Many type2s don't want to feel lectured or gang up on.
Hense why I try and type something more universal, to include none low carbers. Some cannot eat low carb due to gastric problems or nerve/inflammation or specialist instructions. Some cannot fill their diet with thyroid affecting veg or kelp or bulletfree coffees etc.
Many type2s hv other health problems which need similiar attention or time. Many work and hv very little time to read lengthy replies.

 

[TriciaWs]

A) There's an issue I think as I still see T1s taking what they clearly see as the high ground in some fora (not here usually), and claiming along with too many of the media, GPs, nurses and the general public that T2 is completely lifestyle ie fat and eating junk food.
B) What I'd like to see change on here is a way to alert MoDs so they can add a written flag on posts with incorrect information - to appear at the top not buried in the replies. More generally, enough of us challenging the myths with evidence, so a brief summary of the current understanding with links to position papers or research would be very useful.
C) Do you want to be involved in Twitter/Instagram or Facebook more heavily? Facebook, yes, twitter gets too nasty and we get flamed with lies and prejudice, so no thanks.
D) Would you volunteer to be sponsored to attend diabetes conferences? yes

 

[ickihun]

@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've had members message me to say goodbye from here. For numerous reasons.
I'm a person who listens and they tell me so I can continue to represent them. Or so they feel.
I'm often wrong but sometimes I'm right. Ultimately I know Type1 diabetes with hands on experience but know Type2 even more through living with its medical care I've needed and expected.
I know more than some and less than others. I learn by listening to was is typed and what isn't.
Oh and reading medical journals, articles and listening to specialists.

 

[ickihun]

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.

I enjoy the forum. In times I haven't I've treated it like a relationship. With ups and downs.
I want more posters to express THEIR views even if a few core members try and suffocate their turn to post.
Improvements should be a madam/Mr Speaker rather than moderators. Moderators should be advisors in their specialist field in diabetes.
Fair time on-line for everyone not held down with specialist knowledge. Feelings of lack of knowledge stopping a new member asking. Anything diabetes. Facts are great but arrow to the info not bombard posters. Debate areas only for debate.

 

[HSSS]

Many type2s don't want to feel lectured or gang up on.
Hense why I try and type something more universal, to include none low carbers. Some cannot eat low carb due to gastric problems or nerve/inflammation or specialist instructions. Some cannot fill their diet with thyroid affecting veg or kelp or bulletfree coffees etc.
Many type2s hv other health problems which need similiar attention or time. Many work and hv very little time to read lengthy replies.

Can you explain why you’ve attached your reply to my post please? The only questions I asked were aimed at the op and don’t follow if you are answering them or making some other point.

 

[HSSS]

I enjoy the forum. In times I haven't I've treated it like a relationship. With ups and downs.
I want more posters to express THEIR views even if a few core members try and suffocate their turn to post.
Improvements should be a madam/Mr Speaker rather than moderators. Moderators should be advisors in their specialist field in diabetes.
Fair time on-line for everyone not held down with specialist knowledge. Feelings of lack of knowledge stopping a new member asking. Anything diabetes. Facts are great but arrow to the info not bombard posters. Debate areas only for debate.

It would be good to hear everyone’s views. Not sure I’d agree people are suffocated but we each have different perspectives.

How would a speaker work as opposed to a moderator? Isn’t a specialist advisor a different role?

I don’t understand your comment that suggests online time isn’t fair because of specialist knowledge

It’s a real shame people feel they can’t ask because they don’t know something. That’s exactly when they should be asking and a large part of why this forum is here. How can we encourage this more if it’s a real problem? I regularly see comments like “come back and ask anything” or “no questions are silly questions”

Bombarding to one person is helpful to another. Links to supporting evidence are always good but sometimes so is a summary of what it contains.