This is volunteer work on my part. I was invited to submit a paper to a journal on the power and pitfalls of social media in diabetes care. My outline is complete but I'd love to hear a few from the folks at TuDiabetes. If I use your comment(s) in the paper you will be acknowledged in the published article. Thanks and I'll repost when it publishes later this year.
Diabetes overload, my non-diabetic sister states I am so focused on my diabetes because I spend to much time reading and talking about it.
If she only knew how I wish I could escape for only half a day.
Interesting. I recently gave a talk to our local support group about the DOC, and they've asked me to come back and do it again for a larger group. We might profit from swapping ideas.
Also, you MUST watch this, if you haven't done so already:
Thanks for the link. Question for Manny - is there any kind of DOC medical monitoring board that provides guidance to all social media sites? I appreciate that Tu does a good job of policing itself but it would make sense that there might be something formalized and instructive vs. every site or individual having to come up with their own standards for respecting the medical advice line. I know this is a big issue for the medical providers and social media.
That is a subject on which I have extremely strong convictions, so I'll let someone else address it. :)
I have strong feelings as well and don't believe in any form of policing of the internet, barring of course truly illegal behavior. I think the U.S. leads the world in intensively regulating things already. For example in many countries you can buy prescription drugs over the counter and you can order and collect your own lab results. This is based on the assumption that we are adults and if we need more information and care will take our results to a doctor. For example I have been taking thyroid replacement meds for 20 years. When I get a thyroid test I can look and see if it is within range; it almost always is. if there is a problem, I can see it and make an appointment with my doctor.
The same is true of the internet. There is lots of good information and good support out there, and lots of absolute nonsense and even dangerously misleading myths. We, as adults, have to pick and choose among what is helpful and what is not. If we need help deciding if say a certain supplement would be helpful, we can talk to a large number of people who tried it. If I have symptoms I automatically google them to see what I might be dealing with. If it is something mild a dietary or supplemental change will help I try that. If it is something more serious I bring my thoughts and questions to my doctor.
Just FYI I personally don't use the term "social media" for websites like TuDiabetes because I think we are something very different from Facebook or Twitter. So sites like TuDiabetes which now has over 25,000 members tend to form a culture of their own. The reason I like this website especially is because some aspects of that culture that has been formed are: Reminding people that we are not doctors but only speak from our own experience; but knowing that our experience managing D is 24/7 and we often do know more than our doctors about management of our own brand of D; we are a varied bunch and present our own views as just that while maintaining respect for those who differ. When on occasion someone gets overly zealous shall we say, the group gently reminds them to be respectful. So given that culture when I have an issue I post on I feel confident that I can get a variety of opinions based on decades of experience with (in my case) managing Type 1 diabetes and using insulin. I will know (or can find out) how long people have had D, what their control is like and what their special circumstances or orientations are such as Low Carb, Pump and/or CGM use, other dietary choices, exercise regimens, etc. I then "take what I need and leave the rest". I personally get most if not all my information here or from books. I've only seen an endo once and she didn't know much. I've been misdiagnosed as type 2, consequently put on oral meds and when those stopped working started on type 2 doses of insulin (way too high). I've been told my diet was "just fine" when, as a vegetarian I ate quite high carb. Coming on here I was able to figure out my correct diagnosis "with a little help from my friends". When I can't figure out how to insert a new infusion set someone on here gives me detailed instructions. When I woke up at 3AM with me and my cat tangled in tubing my first night with a pump I came on here and someone suggested sleep shorts.
I believe in the freedom of the internet without unnecessary regulation. I believe in that strongly. TuD does "police" itself, but does so with a gentle hand. I would abhor something formalized and instructive" being placed on that freedom.
Thanks for your thoughtful and constructive comment. As an example of adherence to a standard even Tu has applied for and received the HONcode badge. Perhaps that combined with the culture of Tu perhaps that should be enough for a doctor to refer their patients? This paper combined with other efforts like the video referred to above by DNS will hopefully increase a doctor's willingness to refer and incorporate digital media that relates to diabetes care.
For more background on me, I'm a Dad to a 14yr old with type 1 since age 2 and a long career in trying to engage doctors in working with patient self-reported data as well as educational messaging which is why I was asked to write this piece I guess. To be clear, this is one of the most difficult articles I've ever had to write... Cheers.
Thanks for the background, Kevin. I very much appreciate what you are trying to do, and I think it is an uphill battle as doctors, especially in the U.S. are very invested in their own omnipotence. I personally still feel strongly against regulating the internet, and certainly object vehemently to doing it to "make doctors happy". To me that is merely perpetuating the idea that is the role of the patient to "make the doctor happy" rather than the reverse. That idea is already strongly entrenched in our culture and I believe it needs to be reversed not strengthened.
On the other hand I think doctors are frustrated by the overwhelming task of caring for their patients with D and as a result have begun to reduce their expectations which does a disservice to us all. If they can be helped to see that they can partner with their patients who are in turn supported by ancillary sources such as books and online sites, they will see that their jobs will get both easier and more rewarding.
I'm reminded of the one time I actually went to see an endo; to confirm what I'd figured out on my own, that I was, in fact a misdiagnosed Type 1/LADA. I was living in Guatemala at the time and I shared with the endo what I had surmised: I gave her a list of 5 things that had led me to conclude that I was Type 1. She checked off each thing and confirmed, "yes, you are type 1". My guess is an American doctor would have said, "I'll do the diagnosing, thank you!" and dismissed my list. She asked me how I'd learned these things and I said a combination of TuDiabetes and Using Insulin by John Walsh. I gave her the Spanish language board of TuD which she was excited about; she was disappointed to hear Using Insulin hadn't been translated into Spanish. She said, "I wish all my patients were like you". Now if all doctors could learn to be receptive to hearing their patients experiences including the resources that have helped them, then they would then share these with others willingly. I prefer this technique over regulating the internet a resource which many people have fought to keep unregulated for decades.
This is an extension of what Zoe wrote, and is my personal soapbox. The DOC is important especially for those people who the U.S. medical community pretends do not exist: people with adult-onset Type 1 diabetes and people with monogenic diabetes (aka MODY). The DOC can help a person misdiagnosed as having Type 2 diabetes get a correct diagnosis, which was the case for Zoe and so many others here on TuD. Many doctors in their God-state will simply slap a diagnosis of Type 2 diabetes on any adult, without doing any testing to determine what type of diabetes the person really has. It is up to the patient to work to get a correct diagnosis, and the DOC can help.
You can always share my soapbox, Melitta! You actually made me think of something. The other day I went to see a gastroenterologist in the same office building as the PCP who misdiagnosed me in 2007. I thought of popping in to see her and tell her about my correct diagnosis, but I figured, what's the point I'm no longer angry. But you just made me realize that there is a purpose,especially now that I'm able to come from a calm non-accusatory place. The purpose is to give her information so hopefully she won't do the same to the next adult who walks through the door. I'll plan on doing that soon.
I think that the overwhelming amount of data we manage, one way or another can be better managed with a community like the DOC. There are pros and cons to it. I am not a big fan of blogs, twitter or FB although I read some blogs (usually linked into my newsfeed?) and kibbitz with twitter and FB some too and enjoy all fo the above. At the same time, my extensive research (guitar amps, fantasy baseball and diabetes, only D now though!) has shown me that a message board offers the possibility of getting better answers to specific, tactical problems.
If a participant, whether new or old, can achieve a single success at beating their diabetes into submission, that can be a great accomplishment. This success can be built upon and lead to other improvements, one challenge at a time. I am not sure that people getting coached by doctors every 3-6-12 months is likely to have. The difference is that if you wake up at 3:00 AM EDT here and post, it's at least possible that someone in Australia or Saudi Arabia or the UK will pop up and answer your question while they are stopping in during lunch. I know some people get their doctor's phone numbers and I have mine but I've never pulled the lever on the on call slot machine to see what happens.
I don't have a huge amount of experience with CDEs, I tried one when I got my pump and she was nice and pretty well informed but not really telling me a lot I didn't know. I could see that if I wanted to point at a number on the sheet and say "how can I fix this?" she'd probably come up with the right answer but I wasn't really willing to spend $$ to do that as I figure I will probably come up with the right answer myself, or at least get reasonably close and move on to the next challenge.
Another thing that bothers me a bit is that I think that the medical industry sells us short by giving us goals that lead to poor results. If your targets are 140/180 or 110/140, your A1C will probably end up in the 6.5 range, where your doctor wants. To me, that seems to be giving up the challenge of aiming for a more normalized number, e.g. 85-120 or something like that. I don't think the lower numbers are that much more challenging. Diabetes management always involves and element of "if I get carried away, I'll run low, so I should always be prepared for lows since you never know what the hell will happen..." Based on totally unscientific reading of posts, it seems like people with 10+ A1Cs find diabetes challenging and people with 6-7 A1Cs find it challenging and people with 5.x A1Cs find diabetes challenging. The conservative targets don't make it less challenging so we should change our approach. It seems as if many people are satisfied with results near the doctor's goal but still face a lot of repeatable problems that are probably as much caused by the goals as they are by diabetes itself. If you're shooting for 150 and get 180, it's not off that much and I suspect that people, given the size and general state of the community (which I usually sort of scan every few months by seeing what the TuAnalyze Map looks like. I like maps.) encourage a complacency that is misplaced when fighting an evil and sadistic enemy like diabetes.
I am *always* trying to improve. I'd like to see the medical industry stop being lazy and start looking at patients individually. If someone's A1C is 10, a goal should be to improve that. If someone's A1C is 7.5, their goal should be to improve that. If someone's A1C is 5.5, it might be a different problem, always the concern about lows (but really, there are plenty of people here who have reported 10 A1Cs and lows, so it's not as if that confers immunity to hypoglycemia...) but the approach might be to improve SD or eat healthier or exercise more effectively or make better quilts or sing more or whatever else we do. It's always a part of human nature to try to improve and, while 6 or 6.5 or 7 A1Cs are very challenging, the BG readings (avg BG) behind those numbers don't kick ■■■. If anyone deserves an ■■■-kicking, it's diabetes and I think the place to kick it's ■■■ is here, on message boards.
I don't think a "regulatory board" or some type of overall DOC "administration" is a good idea. I've gotten called out for answering someone's "What about IV insulin?" question on another message board but I stuck with it and I think a moderator stepped in to say that the thread shouldn't be banned. I always suggest that stuff is dangerous and there's better ways to approach it but, if my pump craps out and my BG oozes up to 350, I'm searching for my mainline. There are great volunteers at this site and elsewhere but I don't see that any authority would be totally respected as part of the utility is the diversity of opinions about topics.
Really, I think the best thing about message boards supporting people is the way someone can post a problem, people can toss out theories, ask for more info, report their own experiences, while others can share their ideas and the original poster can add in additional data or even update the "helpers" as warranted. I don't see this from doctors, given time constraints.
Thanks everyone so far... plenty of the comments in support of the POWER of 'social media' in diabetes care (and I will be defining that term up front). Is the DOC and/or facebook, twitter, etc... always a positive addition? Surely there are some pitfalls, too and those would be good to call out. I think the goal (my goal) of this paper is to get more doctors to refer patients to peers online as a resource. All tools have potential but it's in how they are used that determine their usefulness.
I am pleased to read that at least some docs understand the power of social media. I think the doctors see medical info on the internet as some kind of Wild West. To a certain extent it is. What I don't like are doctors that don't think that I have the ability to sift the helpful useable bits of info from the abundance of misinformation and quirky tales.
What I've learned on this site, discounted by the medical/nutritional establishment as merely anecdotal, has played a central role in my treatment regimen. No doctor has ever, in 29 years, told me about more complete and advanced insulin dosing techniques that I've learned here. Just because something only carries the weight of anecdote does not make it untrue. It often means that no one has funded that study yet.
This site influenced me to try limiting my carb intake for better BG control. It has worked wonders for me. I've never had a doctor or a dietitian tell me about this. It took peers relating their stories combined with my reliance on N=1 experiments to verify their experience.
I'm glad that the doctors would like to refer patients to the DOC but the unregulated give and take is what makes this environment work. At least here at TuD we keep things civil.
Why do the medical folks think it is so bad to communicate with other diabetics? It’s good to know that you are not alone and interesting to see how others cope. I was left for years as a new diabetic with no contact with any other diabetics. I felt as thought I was on my own. I wouldn’t generally use Facebook for details about my diabetes as the forum is too open to the world! Tudiabetes is better as most readers would have some understanding of the situations we find ourselves in and a lot of combined experience to help out in day to day situations.
Re Brian's question re pitfalls and Kalobe asking about why medical folks might question people communicating, I think their objection is that we are basically practicing medicine without MDs nor with malpractice insurance. We have *tons* of medical experience but it's got exactly zero value in terms of protecting co-members from suggestions that are outside of medical thinking. Insulin is dangerous stuff.
Diabetes is a chronic condition, it has to be dealt with every day. As such, it needs a holistic treatment and for the most part the healthcare system can only provide part of that treatment. You can go to a doctor to get medicine or insulin, you can go to a RD for diet, you can go to a CDE for proper practices and maybe some exercise advice (I'll address competency later). But we are left alone in this world when it comes to putting it together and executing. And make no mistake in the end, you can have all the right medicine, insulin and knowledge about diet and exercise, and it won't be worth a dime if you can't get your head around doing it diligently day in, day out. And that is where social media shines, it helps us deal with the mental part. And it is that mental part that is truly the challenge.
That being said, I have also found social media to contain a wealth of knowledge despite being made up of patients, not "professionals." The wisdom of crowds can truly work wonders. In fact, the "peer review" process in science works the same way. And many of us can attest to the competency problems with our health care professionals. Doctors have shallow knowledge of diabetes, they misdiagnose, mistreat. Dieticians who echo the "party line" and mock carb restricted diets and CDEs who lecture us that if we just ate better and exercised we would all just get better. Well guess what, knowledge seeks to be free and social media enables the truth to be revealed. Healthcare professionals have actually called social media "dangerous" because medical information that is not "vetted" is put out there. But I have also seen terrible "vetted" information.
In the end, tuDiabetes and social media is not here to replace your healthcare team. Everyone who uses social media should always consult their healthcare team with medical questions. But as I mentioned, diabetes is a chronic condition, we live with it everyday. And after years of living with the condition, many of us have gained valuable knowledge, sometimes far more than your general physician obtained in a day of lecture in medical school. And sometimes, just knowing the right questions to ask when you talk with your doctor can save your life.
OKAY . . . I was hanging back on this but since it has triggered such an outpouring, here's my $0.02, in bullet form.
(1) Repeat after me: doctors are trained to intervene and attack acute illness -- they are not trained in day in, day out management of chronic conditions. Repeat as necessary.
(2) A doctor generally spends 4 years in medical school. That 4 years includes, on average, 1 to 2 days on diabetes. The people in this community live with it and think about it and deal with it 24x7x365.
(3) Highly trained occupational specialties are exclusionary by nature. "We know more than those on the outside." Medicine is as subject to this rule as any other vocation.
(4) This community is 27,000 people and growing. It comprises a breadth and depth of shared experience that simply cannot be encompassed by a single person. To borrow a line from my standup presentation, 27000 heads are better than 1.
(5) As Brian said perfectly, the mental aspect of management is key. And that is what a 24x7 resource supports as nothing else can.
(6) And while we're on the subject of the mental dimension, the other distinguishing characteristic of this community is emotional support, which for many is the pivotal variable that determines whether they give up in despair or refuse to be overwhelmed and demand from themselves the effort required to achieve the best control possible. By a wide margin, the most frequent comment made by a new tuD member is: "Until I came here, I thought I was alone."
(7) Zoe's comments about policing and regulation are bull's eyes. I second them. And third. And fourth. In my universe, this question was settled by the First Amendment and any further comment is simply superfluous. "Regulation" in the context we are discussing is simply a euphemism for censorship. And that trumps all conceits about expertise or superior knowledge. It's overt paternalism and I will have nothing to do with it.