A great mockup used for this post!
This paper was written by dear friends and seen our work been validated feels AMAZING!
A great mockup used for this post!
This paper was written by dear friends and seen our work been validated feels AMAZING!
It looks like a strong relationship between diabetes online community participation and positive concrete health outcomes.
Results: A total of 183 adults participated in this study. Participants were mostly female (71.6%, 131/183), white (95.1%, 174/183), US citizens (82.5%, 151/183), had type 1 diabetes (69.7%, 129/183), with a mean age of 44.7 years (SD 14) and diabetes duration of 18.2 years (SD 14.6). Participants had higher diabetes self-care (P<.001, mean 72.4, SD 12.1) and better health-related quality of life (physical component summary P<.001, mean 64.8, SD 19; mental component summary P<.001, mean 66.6, SD 21.6) when compared with norms for diabetes.
I found this result interesting.
Our data also indicated that study participants are oftentimes (67.2%, 123/183) not informing their healthcare providers about their diabetes online community use even though most (91.2%, 161/181) are seeing their healthcare provider on a regular basis.
I wonder if doctors will examine what appears to be patient reluctance to mention the beneficial effects of participating in a diabetes online community. Does the physician attitude toward non-doctor sources of information have anything to do with this patient reticence?
It’s nice to see a study demonstrating what many of us have known anecdotally for years!
Mila, thank-you for posting this. I’ve read through most of the report and I find it interesting and persuasive. I think I’ll send this study to my doctor and a few of her peers at my diabetes clinic.
I highly recommend clicking through and reading the underlying narrative. There are concrete positive health outcomes for participating here.
More from the study. Sorry for my repeated comments!
There is limited data on negative patient outcomes related to DOC [diabetes online community] use ; however, misinformation on social media sites is infrequent [35,36,44,45] and quickly corrected by other members in the discussion group [35,39].
I do think the open source nature of active interchange venues helps correct the discussion. We do know how to disagree!
I think it depends on how the question/reference is made.
I have mentioned to my endo several times that I tried X or Y based on discussions on DOC. For example lower carb, pre-bolusing, tricks on better CGMS usage, etc. He doesn’t react much other than to say if it’s working, keep doing what you’re doing.
Probably the closest you would get to saying it was a good thing.
When reading about research results, it is always important to read the original article, not the abstract or someone else’s report of what it says.
That ‘study’ was based not on a tiny sample, but on a microscopic sample.
The sample was admittedly, in their own words, a “convenience sample”.
The results were based entirely on self-reporting.
Since the self-respondents were largely users of TuDiabetes, it is not surprising that the results validate the feelings of many people associated with TuDiabetes. I frequently agree with myself.
For all I know, the implied ‘facts’ may be true, but as someone who has been associated with professional research in biology for a while, and in other published academic research since before many of you were born, I can only say that I wouldn’t dare show that article to any of my associates even as a joke.
As one of my former teachers once said, an interesting human document.
I don’t know how my current endo feels about the DOC, though I think he supports the concept, since he does annual (or semi-annual) “patient information” gatherings to promote the practice (of course) and get patients access to several vendor reps, and to get patients together to discuss their successes/failures (mostly successes ).
My previous endo was not terribly computer-savvy, but knew that many of his patients were active in the DOC and supported the idea, and many ideas driven by the DOC.
Please, Terry—don’t ever apologize for “repeated comments” ! As far as I am concerned, this wouldn’t Be TuD without your strong, smart, kind presence. It’s kinda what TuD is all about!
No we don’t!
Thank-you, @Judith_in_Portland! I like participating here but I realize that given the two-dimensional nature of a written forum, it can be very easy for the communication to break down. But then, we humans can have trouble connecting even in face-to-face environments. Sometimes it’s amazing that we ever communicate well!
My experience with my endos over the years regarding the value of online diabetes fora has ranged from neutral to eye-rolling skepticism about seeking diabetes truths from the “internet.”
But I know doctors exist who appreciate the power of peer support. I need only to consider Dr. Stephen Ponder to see a case of whole-hearted embrace of the diabetes online community. But then again, Dr. Ponder is a T1D in addition to being an endocrinologist.
Funny how that works! I think we all look for context that confirms our existing beliefs. We can see that in spades by the political fora that people frequent. We tend to go to the venues that support our beliefs instead of challenge them. People don’t believe what they see, they instead see what they believe!
Your criticisms of this study are valid from a scientific perspective. I understand the logical defect of anecdote, but I also realize that just because something is anecdotal does not make it false.
It would be nice if there were ample resources to fund a study that could test the value of internet peer support with diabetes but, unfortunately, there is no potential economic benefit accrued for capital to exploit, merely a social good. The benefits of carb-limited eating for people with diabetes has suffered from the same lack of resources to produce the hard science to support it. In the mean-time we’re all getting older.
I don’t disagree with the paper itself. It seems to use the right words and statistics to show that participants in the DOC have better control than the diabetes community at large. An association that I have frequently observed myself.
However, I do disagree with many here who assume that the better control was caused by participation in the DOC. It seems far more likely to me, that only the better controlled diabetics choose to participate in the DOC.
I think this is one of those “chicken or egg” arguments. In my case, I wasn’t really even aware of low carb eating as a viable tactic to control blood glucose until I started reading here.
I’m sure I could have found other sources since I’m intellectually curious and like to read. But I didn’t.
In my case, I credit the heated low carb debate on TuD with persuading me to give it a try. It’s been one of the top reasons I can maintain some semblance of glucose control. Anecdotal, I know. Your point is a good one.
No chicken/egg debate here. TuD was the first online community I joined, not too long after Manny and Andreina founded it. I had been one of those, in 2007, whose doc said–oh yes, you have diabetes, handed me a brochure and sent me home. I had to go online to my Kaiser page to even discover what Type of diabetes I had (T2)…
Reading being one of my main routes to finding my way in the world, I promptly devoured every book, lecture and website on the subject I could find. One day, hoping to find companionship, I googled “artists with diabetes” and it led me to a newly forming group right here!
I knew nothing. Manny and Andre themselves taught me much and some of my earliest support came from T1s because here–type didn’t matter–we all helped anyone we could. If I couldn’t answer insulin questions, for instance, I could certainly refer a new T1 to someone who knew a lot about insulin! Those amazing T1 twins, my early helpers, are still cherished by me and I stay in touch with them. Online relationships are whatever we chose to make of them–including non-virtual, lifelong friendships!
In other words–I didn’t know what good control even meant until I landed here. And yes, here is where I first heard of Bernstein’s low carb approach. I have used that as a basic guideline for good control since maybe mid-to-late 2007, during which time my A1cs have ranged from 4.9 to 5.7…I adore THIS online community and given the horrible state of ignorance about diabetes back then, I don’t think it is hyperbole to say that this little piece of the DOC saved my life…
That’s power of a special kind…Judith in Portland
One more for the chicken-vs-egg-less folk. TuD was not my first venture into the DOC, but without a doubt, the DOC 9at that first place and later here) has helped me along on my diabetes journey. Online friends helped me get thru my first insulin injections, after my GP simply gave me samples and told me to go home and take injections…
Online friends helped steer me away from the disastrous (for me) sliding scale dosing methods and taught me how to count carbs… Online friends helped me adjust my basal injections to two shots and manage the timing of such… Online friends helped convince me to try a CGM and later a pump…
All these things have contributed considerably to my better control and well being with diabetes – and all were initiated or facilitated more by the DOC than my healthcare team.
I wholeheartedly agree with Judith in Portland! Although I am relatively new to TuD, I am not so new to diabetes itself. I joined the online community when what we had were Lists and people communicated via mass emails through those Lists. I owe my life to several on the International List who urged me to get antibody tests after I voiced frustration at being unable to gain any control at all. I was diagnosed by an NP as a T2 (because of age). She adamantly refused to prescribe insulin. I lost a lot of weight and felt as though I was dying until, at the urging of those List people, I found an endo who immediately prescribed insulin and ordered the appropriate tests. I gratefully owe my life to the online diabetes community.
YES!!! I firmly believe that the greatest diabetic advancement in the last 20 years IS the internet and social media!!! How can you debate this? (just kidding. don’t answer that) Medicine does a great job of curing sick people that can be cured. We go to the dr., listen to their advice, and follow it in order to get better. But diabetes needs MANAGING. I don’t think the medical community does that very well. Anyone who was LADA and spent time misdiagnosed as a Type2 can vouch for pain and frustration for the medical community insisting on their diagnostic criteria for “Type 1” and then being unable to look past the “rules” can tell you what a relief it was to find support online that something else is going on. Even if you have been T1 at dxd every Endo manages so differently and so widely. I had no idea I could change my basal rates and settings until I found TuDiabetes. NONE! My whole life I had this idea that I went to the dr. and listened to their advice and got better. NO ONE TOLD ME (until I found the online community) that diabetes was DIFFERENT!!! How the heck should anyone know this? It has only been through online communities and podcasts and people online recommending books that I found out that I need to be the one to manage it. No doctor ever told me in the beginning I needed to take control. They are happy to manage my settings twice a year and let me deal with the fall out the other 363 days of the year. So whether the study was professional or not who cares??? It’s just the truth. Insulin is great, CGM’s are great, pumps are great, all the advancements are great, but if we don’t know how to use them or what they are, or if we never hear about how real people are managing their diabetes on their own, or that we need to personally take control of our diabetes then who cares what technological advancements are made?! What good are they???
Dr. Ponder is AMAZING!!! HE GETS IT!!!
I am sure that Dr. Ponder is amazing. But he was not my endo and I have never met Dr. Ponder. My commendation was to the online community that began shortly after the internet became available in the form of Lists (now Forums). The people who gravitated to the online diabetes community were amazingly helpful. I actually had diagnosed myself because of family history, but could not get the Nurse Practitioner in these boonies to understand that my symptoms were typical of T1 (no matter how old I was) and I needed (as in had to have) insulin. This illustrates how backward a great many health practitioners were and, frustratingly, still are. What is amazing is the help that the online community offers in management from the basics to the intricate navigation of all the gadgets, institutions and government rules and regs.