Published Report: Experiences of Hypoglycemia Among TuDiabetes Members

Community
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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 tuanalyze@chip.org.

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W00t! Augmenting traditional surveillance one surveil at a time! Thanks for sharing that! Next time, you ought to play "science jeopardy" and have them try to guess which survey goes with which forumite, based on their review of 10,000 posts...heh heh heh...

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What a proud achievement for the TuDiabetes community and Diabetes Hands Foundation.

This is an example of how we, as patients, can let our voices be heard and our experiences known by the medical establishment. It may be a small study, but it's a start.

Thank you to everyone who participated.

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Congratulations on revealing the power of social networking to affect health benefits for participants and their greater community. While I am just a PWD, I like to read medical studies about diabetes. I know not every one is interested in the nitty-gritty detail of these types of studies.



It appears to me that I cannot access this published study, beyond the limited summary, unless I pay a significant fee, even though I participated. Is there something I’m missing?



I would like to see the study results, even though I am not a doctor. And I prefer to not have to pay. What do you think?

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Hi Terry,

Unfortunately we cannot share the full paper on the site as it is under copyright.

As this work was funded by the National Institutes of Health (NIH), the full paper will be available for free in one year on PubMed Central (http://www.ncbi.nlm.nih.gov/pubmed)

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Congrats to DHF and all who participated. What a wonderful achievement and example of what can happen within the DOC!

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How do you access the full report? Best I can find at that location is the abstract, with no link to anything else.

????

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Kind of hard to think of this as a TuD achievement when TuD participants can't even read it!

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my sentiments exactly. its ridiculous.

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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.

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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!

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a bit of a priori logic there, Zoe. But i do understand where you are coming from.

How do you feel about this comparable situation:

People in the united states worked to create a program in India that provides supplies to people with diabetes! Should the creators of the program not celebrate the positive impact their work has brought forth because they are not physically in India, receiving the supplies themselves?

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Obviously they should. I think I didn't make my point clearly. I'm not saying it wasn't a useful project, just that it's harder to take ownership of something when you can't follow it through. Ironically, as TuD gets involved in broader projects, they probably do more good while the sense of involvement and empowerment of the community as a whole decreases. Or perhaps it's just me who at times feels more of a "they" and less of an us when it comes to these larger DHF projects.

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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.

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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.

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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.

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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.

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Could not agree more.

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Dear All,
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: elissa.weitzman@childrens.harvard.edu.

Thank you for your input and support,
Elissa Weitzman

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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?