The State of the Diabetes (Social Media) Union: your take...

As I prepare for another fun session I will be delivering along with David Edelman, Amy Tenderich, and Hope Warshaw, at this year's AADE meeting in Philadelphia, one of my tasks is to share with attendees 'The State of the Diabetes (Social Media) Union'.

I would love your take on it, to bring to the meeting everyone's thoughts in true social media/crowdsourced spirit.

If you can, please indicate in one paragraph your opinion about the highlights, the not-so-great moments and the opportunities in diabetes (social media) in the past 12 months or so.


Views: 381

Comment by jrtpup on May 13, 2013 at 12:17pm

The biggest highlight for me is that social media provides support and information 24/7/365 for a condition that the PWD lives with, and must manage 24/7/365. There is no other arena where this is available (certainly not from medical professionals). Just TuD (one of many)has grown hugely in the past year, demonstrating the need and effectiveness of Diabetes social media sites.

A negative, for me, is the concern of many medical professionals about referring people to social media sites. I spoke with one CDE at a pump company who said she would never refer someone for fear that they would get misinformation. Understanding about what happens here is obviously lacking, and acknowledgment that peer support is a necessary component of good D management (and mental health) is missing.

Comment by David (dns) on May 13, 2013 at 1:57pm

I must voice emphatic agreement with everthing Barbara said, and add two more comments.

First, SOME (a few) HCPs do "get it" about the value of peer support. My doctor certainly does; he has specifically asked me about tuD so that he can refer patients here.

Also, although the rate of progress is, well, glacial, I do see some increasing awareness of the DOC's value out in the broader diabetes community. Gary Scheiner, for example, makes specific reference to it in his latest book.

Comment by Marypat on May 13, 2013 at 5:54pm

Manny- TuD has made a big difference for me. I found support, new ideas to make life easier, and even a laugh now and then. TuD introduced us to many experts in the D field. I purchased books recommended on the site. I got support to manage quality of life decisions like food choices and how to wear a pump as the mother of the bride. I also participated in the D study with Dr. Denise Faustman who was featured on the site. The down side is that more people are still not connected. I have recommended TuD on numerous occasions to family members of a D patient. I don't take medical advice from social media, but I also think that experienced LADA / T1 patients are qualified to share their experience with others. I have a great endo, but there are far too many medical practitioners who could be better doctors if they would "listen" to the patients on TuD.

Comment by acidrock23 on May 14, 2013 at 6:19am

To me the best thing about social media is that it has checks, balances and information balanced more than I perceive many people get from their medical providers. With a doctor, you are playing "one on one" and the game can be imbalanced if you end up with an endork who agrees with Medicare/AMA/ [insert insurance company] than you need 4-7 strips/ day instead of an amount based on careful analysis of your lifestyle and its diversity. My doctors have not been averse to my participation in social media however they don't seem to be very engaged with it either. I would like to see them develop more interest in getting people aimed here.

Unlike the "one-on-one" or maybe even "one-on-three" if you're dealing with a team, you are dealing with a much broader resource base that I have observed answers questions readily but also contains ample checks and balances to protect people. If someone says "I think you should rage bolus 15U..." (which I saw on Glu this AM in a "what is a rage bolus?" thread...I don't post much there as it doesn't seem to have quite as much traffic but it's a nice site...), someone else will likely, at least here at Tu, appear to post a more measured response, depending on the amount of information available. When you go to a doctor's office, the doctor finds highs and circles them in the log and finds lows. If you have a good doc, maybe they'll spy a pattern. Online, people will ask pointed questions seeking more information so everyone can develop an answer together while we give each other "high fives" or "likes" or whatever. I also agree that having the 24-7-365 connectivity is far more useful than a doctor as, in my experience, many specialists are like 9-4, 'til noon on Fridays, maybe an on-call doc on weekends. I do ok so I rarely ask questions (even online...) but I like knowing that the sun never sets on the DOC.

[sorry for two paragraphs but I felt it makes it a shade more intelligible! Have a great speech and I hope you can post a link!]

Comment by acidrock23 on May 14, 2013 at 6:22am

Oh, not so great moments, I forgot. I am not as keen on Twitter and FB for answers and think that blogs, although I read them occasionally, encourage elitism to which I am always opposed. I believe that the message board is the best of all possible worlds for online disease kibbitzing and, for the reasons cited above, should be emphasized both by us and by doctors.

Comment by beechbeard on May 14, 2013 at 6:59am

Good things include very insightful insights on T1, metabolism and weight loss got me to my lowest A1c in 42 years, a better understanding of metabolism and 20 lb weight loss so far.
Weakness (and possible strength) is that there is no software "memory." It is all in member's heads. So it works as long as the community is active and large. Small sites maybe not so much.

Comment by Andrea on May 14, 2013 at 7:59am

For a bit of an international perspective, a major highlight for me in the last year was the sprouting of more diabetes tweetchats in timezones around the globe (and specifically the 16-hour global tweetchat on world diabetes day 2012). This has allowed more participation in this type of discussion but also show that the issues we deal with as people with diabetes are very similar, no matter where we live or what language we speak.
The flip side of that (and I'm not sure we could call it a down-side, to me it just proves that there is real need in being able to connect through social media channels) is that there are so many social media platforms that have sprouted recently that it isn't easy to keep up with them all!

Comment by Terry on May 14, 2013 at 9:21am

The social media in the diabetes community offers support and motivation that medical professionals cannot even begin to appreciate. Knowledge that I picked up at TuD and other websites allowed me to construct a plan that immeasurably improved the quality of my life.

Doctors have no idea what 24/7/365 means when it comes to living with diabetes. People in this community do. And they're not afraid to disagree with medical dogma! Ideas about low carb eating and insulin dosing using protein and fat brought to me significant weight loss, low BG variability, a significant reduction of hypoglycemia incidents, and a lower A1c.

I've been seeing endos 4x/year for 29 years and the number of insightful BG management tips I've received can probably be counted in one or two fingers. The worthwhile, useful, and proven tips that I've received in the social media are just a handful, but each one powerful in helping me regain health and quality of life.

Comment by Rob Muller, Roche Diabetes Care on May 14, 2013 at 11:06am

I believe the state of the union is strong, Manny, for all the reasons mentioned above plus the fact that discussions can take place, even where there is disagreement, and they remain thoughtful and respectful for the most part. Look at the recent debate over renaming types 1 and 2 diabetes; there are strong opinions on both sides. The fact that the community can have honest discourse and disagreements such as this without resorting to name calling and ad hominem attacks (like so many other communities do) is a sign of its maturity, strength and unity.

Comment by Clare on May 14, 2013 at 11:44am

The highlight for me of this community is the tremedous wealth of experience with D. I recently celebrated my 38th "diaversary" and can honestly say I have learned more about living and thriving with D in the last year than I did in the previous 37. While I can ask my nurse or endo their opinion of a pump or pen they can only give back what they have gotten from the drug rep or pump salesman, they cannot give back their experience.
The downside is the petty stuff that can happen behind the scenes when strong personalities or opinions collide. But that happens in virtually every community and here there are enough checks and balances to keep things civil.


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