Published Report: Experiences of Hypoglycemia Among TuDiabetes Members
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.
Replies to This Discussion
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Permalink Reply by acidrock23 on -
That's a great way to put it!! Scientists only believe stuff they can quantify and the report, at least from the precis, appears to do that and leaves the door open for more research. I was thinking it'd be pretty low cost to so a study on hyperglycemia, simply by editing the questions?
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Permalink Reply by David (dns) on -
I get all of that, and it's all true, much good will undoubtedly result from it in a great many ways and many people will benefit. It's a very good thing.
My gripe is that WE were the test subjects, we provided the data, without us there would have been no study, and it's a poultry byproduct for us to be in effect cast aside when we're no longer useful, not permitted in the audience.
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Permalink Reply by acidrock23 on
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As. Dr. Weizman explained: "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."
I think that if you want raw data you should do your own survey. Which I will happily take. I love surveys about this stuff. I'd probably check out the article too, just for fun but I'm sure someone will post a link in a year if it becomes available.
Or maybe this thread is a survey? "600 people took a survey and 12 posted follow-up comments in a thread with 5 follow up respondents [FUR...] responding negatively to the prospect limiting access to surveys. One FUR responded they will not take additional surveys, a "casualty rate" of 8.3% of FUR and .0016% of all respondents..."
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Permalink Reply by David (dns) on
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. . . and I have, indeed, tried to "send an email to the team." So far, dead silence. Still trying.
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Permalink Reply by Elissa Weitzman on -
Hello, I'm so sorry you have had this experience. Did you email tuanalyze@chip.org? While we all find this constraining, we are bound by copyright agreement for the journal. If you would like to communicate directly with me, you are welcome to do so and can email me at:
elissa.weitzman@childrens.harvard.edu.Best,
Elissa Weitzman
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