We are pleased to announce the publication of a new report about hypoglycemia, based on the experiences of TuDiabetes members: Using data from the TuAnalyze Hypoglycemia Survey, the report summarizes experiences of hypoglycemia, and related problems, among members of the TuDiabetes community. The paper, titled "Participatory Surveillance of Hypoglycemia and Harms in an Online Social Network", was published online in the journal Journal of the American Medical Association (JAMA) Internal Medicine on February 11, 2013.
While hypoglycemia can be a serious, daily problem among people with diabetes, the true extent of hypoglycemia and its effects on people with diabetes are poorly captured by medical and public health monitoring efforts. Currently, most estimates of hypoglycemia come from emergency room visits and clinical trial reports, neither of which captures the full picture of the problem. By surveying members of TuDiabetes through the TuAnalyze application, we sought to enhance traditional surveillance methods with direct reports from patients.
In the Hypoglycemia Survey, we asked you to report on both severe hypoglycemia (a low resulting in unconsciousness or seizure, or that required glucagon, medical treatment and/or help from another person), and the total number of lows of any severity over the past two weeks. About half of participants reported going low more than 4 times in the past two weeks, and nearly 30% of participants experienced one or more severe lows in the past 12 months. Negative effects of hypoglycemia on daily life were common and included: daily worry (reported by 46%), avoiding important typical activities (reported by up to 54%), and accidents/injuries (reported by 15%). These were most common among those who had experienced a severe low in the past year.
This paper is based on reports from 613 TuAnalyze users. If you took the TuAnalyze Hypoglycemia survey and Care Overview survey before April 2012, and you use insulin, your experiences are included in this paper!
You may read a summary of the paper here. The paper was published with an Editorial Note from the journal editor, and an Invited Commentary from Dr. Aaron Neinstein, author of the Diabetes Technology Blog. You can also see the Boston Children’s Hospital press release about the paper here.
We would like to extend a huge thank you to everyone who has participated in TuAnalyze! Your support of this project is what makes our research possible.
If you have any questions about this paper, TuAnalyze, or our research please let us know below or contact us at email@example.com.
I can sort of understand the interest in the full paper but restricting reports of that nature isn't totally unusual either. I don't sign up for much that requires me to fill anything out so maybe I miss some good stuff. It seems likely the info will be made available at some point in time and I still think that it's a useful exercise to make a group of people with data and opinions available to scientists and doctors who may be looking for some of both with a project like this. I think that it's important for us to participate in these projects. Many of us are probably at the cutting edge of knowledge about diabetes and have a lot that we could contribute to both the science and the society of medicine.
That may be, AR, but I guess my estimation of what is a TuD activity and what is not has really changed. But then I hate having TuD referred to as "social media" and I don't have a chance in hell of changing that either!
I'm with Zoe on this one. It's their study, they did the work to compile it, and they're free to reveal or not reveal the data as they see fit (I guess). But I don't have to like it, and I don't.
But what's scientifically important about the study, or at least my perception of what it is from the summary information that is available, is that someone has made an effort to evaluate the utility of social media our communal activities in the context of health care. 613 seems like a pretty big number of participants and I have to think that a researcher might find it useful to have so many people with so much data hanging out together. If somebody wants my data file for something, all they have to do is ask. If there were say 20 or 50 or 100 of us who would do that, it may be possible for a researcher to put together a study that might lead to a useful conclusion. They also noted that "96.6% of the sample permitting recontact for research and 31.7% posting personal study data on their app profile page; 40.5% of 2825 unique page views of research-related materials published on the community site involved views of returned research results" which I would think would be useful to know if one were putting together some sort of study, looking for guinea pigs.
I think there's huge opportunities to improve diabetes care however it will take quite a bit of leverage to move established trends in conservative care to a different level that might help people. I'd read the study if it was up but I took the survey what seems like eons ago so another 9-12 months doesn't bug me. It's the way of the world. I would like to see more surveys and exploration of how our community helps people. If the "study market" is controlled to the extent that we have to sign up or pay to read stuff, I am way too lazy to do that but I will gleefully participate in any survey I can.
Good points, AR. I believe I took the survey as well. Perhaps I should sublimate my negative feelings about the loss of community intimacy to the greater good of letting the world know we, the consumers, matter, and the DOC is how we speak in large numbers. I love your "correction"; I'm probably the only person it bugs. I've been involved in Message Boards of various kinds since the middle/late 90s; they far predate social media. Perhaps I'm stuck in the past, I just don't want to see Community replaced by Apps.
I totally agree about that! I have done message boards for 3x disparate things (guitar amplifiers, fantasy baseball and diabetes...) and totally think that they produce better information, because of checks and balances, and better community than other forms of communication, e.g. Facebook/ Twitter/ emails/ etc. I like kibbitzing with people on FB but I don't see the information being passed around there at the same level as I do here.
Could not agree more.
The TuAnalyze research team is following this exchange and aware that many of you want access to the report. As noted in a prior post, we are bound by copyright agreement which precludes our publication of the journal article. The article will be freely available through PubMed in one year. This is a long delay and I have submitted a request to the journal to allow us to make the report available to the community and will keep you posted. Meanwhile, we can provide summary materials to individuals who request them--please send an email to the team if you would like to receive any additional materials, or contact me at: firstname.lastname@example.org.
Thank you for your input and support,
Thanks for the explanation, Elissa.
Who, exactly, are "the team" -- or, rather more to the point, how does one go about contacting them to request the summary materials referred to?
Aside from the point, but just as a matter of intellectual curiosity, what is the rationale behind copyrighting this material? I was taught that the purpose of a copyright is the same as that of a patent, i.e., to prevent one party from commandeering (in effect stealing) the pecuniary profit that rightfully belongs to the actual inventor or creator. Does someone expect to realize a profit from compiling this research?
This is very interesting, because the whole idea of this research was based on the contributions of the DOC, and the strongest principal of online communities is open access to, and sharing of, information. A bit contradictory imho.
i test often to prevent lows but sometimes it hits me so fast that my vision goes & glucose is always in my mouth ...by myself
when i was a child i remember my mother pouring sugar water in my mouth & of course spilling all over me
that is why i hate sweet things & sticky things
if you want to know more i will answear any question anyone has.
because of my left eye not seeing well the symptoms of low bg & my eye are similar so...i somtimes don't know which is which.
I get that some folks are disappointed that they can not access the full paper themselves, but here's some good news: this report is getting lots of attention! This means it is reaching people who probably didn't already know what we go through. It's informing scientists with an interest in diabetes research. It's informing doctors who are dangerously ignorant of their patients' experiences. It's informing decision-makers at FDA who review applications for new diabetes-related medications and technologies.
We in this community already know what it's like to have diabetes. We don't need a study to tell us that our blood sugar gets low and we feel like the world is ending. I want those other people to know that, too. And this report, telling our story in a highly-respected scientific publication, is doing that. I see that as a great success, worthy of whole-hearted celebration.