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.
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.
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.
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.
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!]
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.
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.
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!
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.
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.
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.
Social media trumps almost everything in the diabetes world... from getting a "second (and often more helpful) opinion", to being less isolated, to an opportunity for expression, or to helping someone else. We are, however, unable to participate in the many physical events that social media has given birth to. These seem very USA-centred. Perhaps in years to come there will be opportunities for us to participate in those events from afar and to have a better and more participatory voice.
Don't feel singled out, Susi. I live in the states and I don't get to any of them either. It's a very big country (like yours) and places are far apart.
TuD, the only social media/community that I interact in, is empowering - to the point of changing people’s lives. Its inclusive value: I never feel alone with my disease because I can talk about anything - food, anti-depressives, irrelevant topics to D like hockey and movies (holistic approach to PWD). Its huge educational value: learning about a new drug for T2, learning about the importance of of A1C - before it was just one of several numbers given to me by the dr., not something I can use as a devise to set goals with; research guidance - what books and articles I might find useful, and help with prioritizing, for example, information on carbs, which I passed off previously. Repetition of information from various people is critical in this commercialized media dominant society, and this, too, is an important aspect of TuD’s educational value. The connectivity component: TuD connects me with the political movements of the PWD group, albeit dominated by America, like the tester/pump apparatus being approved by insurance companies and the DMoms trying to change names, and the sociological value where personal beliefs become public - like the realization of the T2 stereotype is actually near to universally held, and so we can do something to change it - if we want.
Life IS better with TuD, and problems are few: we may be a herd species, but that doesn’t mean we get along with everyone in the herd - it may be the flaw to our existence or it may its saving grace because it means that we may seek out to start new communities and this helps to proliferate - it seems to be a coin toss in my books. At any rate, I know “I am not for everyone” (an unknown comedian said this and I have adopted as my credo), but, as Clare said, TuD has a respectful environment where bashing would not be tolerated. The down-side to this is the “sanitizing” or deletion of offensive postings. I looked at the DMoms issue and found only bits and pieces, as apparently it had been “cleaned up” of offensive posts. Some people lack elegance in their writing, but the content has value, and I would have liked to have heard what these people posted, but not for the “juiciness” element.There is a problem of where to draw the line, and I would like it drawn a little bit more to the authentic side, though I am oblivious to the responsibilities of social media’s responsibility to avoid litigious situations.
Hope my thoughts help you to write your speech. You might want to talk about how your task got easier (and maybe harder) with all the input from us - lol!
I think the state of Diabetes Social Media is strong and growing stronger. We just saw D-Blog Week have well over 100 participants, Twitter chats are expanding into different time zones and languages, pod casts and internet talk shows are expanding, advocates are joining together to create topic driven initiatives, we just saw the online diabetes hope conference break new ground by bringing conference content to a free online experience.
I was particularly encouraged to see an educator step in as a guest host on #DSMA. Professionals joining the conversation is a significant step to a more valuable exchange and one that takes place between equals. Important in that process is earning the trust of providers.
Part of earning that trust is to respond appropriately to misinformation. There will be mistakes shared and even outright quackery on the internet. If the community can demonstrate self correcting that can help earn needed respect. Maybe more importantly self correcting can help professionals see that they can participate without needing to be the fact police.
There have been a few cases where the diabetes community has worked with other heath communities. That is another sign of both strength of the DOC and the maturity of the community that can see where common interests exist and to organically respond.
All this is not to say we do not have some real challenges. The diabetes online community does not reflect the reality of diabetes in our larger off line society. The DOC is disproportionally T1D. We need to find ways of being more inclusive and supportive of the majority of PWD who have T2D. Likewise the DOC can be more inclusive of cultures and languages that are more at risk for diabetes, particularly T2D. I see theses as opportunities to build from the strengths the DOC has developed.
Lastly the DOC has the opportunity to add to our role of individual emotional supporting to becoming a force for large social change. We can help professional feel welcome in and supportive of our community. We can work to help change the perception of diabetes to recognize the genetic reality and move from the false blame the patient perception that is too prevalent.
Over the last few years, it’s been a pleasure to become more involved with the diabetes online community. As the community grows and matures, it’s wonderful to see the big impact that support and information from peers, industry and non-profits – in partnership with outstanding healthcare teams – can have on the lives of so many people with diabetes and their families. This last year, our customers have shared some amazing stories of how they’re pursuing and achieving their dreams – from graduating college and raising a family to skydiving and trips around the world. But what’s most amazing, is when one of them reaches out to a newly diagnosed family or someone having a rough day to say “You are not alone.” Moving forward, there’s a great opportunity for us all to nurture that partnership to reach and support even more people. When you present at AADE, I would be very interested in hearing feedback from educators on how they think that social media can complement their invaluable work. What do they need from us to improve the lives of their patients? And how can we – patients, healthcare providers, industry and non-profits – unite to advocate for important issues affecting the diabetes community?
For me, I read about other's experiences on the DOC, and it helps me to refine my own care. I say, "an old dog can learn new tricks." TuD has been very motivational for me.
And as you know, Manny, sites like TuD can help in areas where doctors/the medical community are sadly so far behind. Think adult-onset Type 1 diabetes/LADA.
