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 firstname.lastname@example.org.
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...
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.
Kind of hard to think of this as a TuD achievement when TuD participants can't even read it!
my sentiments exactly. its ridiculous.
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?
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.
I really wish that we could publicly post the PDF for the paper (I really do). Unfortunately, this has everything to do with the way these academic journals work.
It is my understanding, and something that makes me feel very happy, that there's a whole movement under way called Open Access:
providing unrestricted access via the Internet to peer-reviewed scholarly journal articles.
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)
How do you access the full report? Best I can find at that location is the abstract, with no link to anything else.
Thanks for confirming that the data from TuAnalyze will be used to develop copyrighted materials with limited access. This is a significant dis-incentive to participating.
Can you reproduce the raw data somewhere so that someone who has paid can reproduce the findings of the paper for all to see?
Congrats to DHF and all who participated. What a wonderful achievement and example of what can happen within the DOC!