Dear members of the TuDiabetes family,I am incredibly happy to announce TuDiabetes has partnered with Children’s Hospital Boston in the creation and launch of a new application called “TuAnalyze,” which we’re launching today. The application enables members to submit their Hemoglobin A1C as part of a massive data donation drive.
The information submitted by members will be displayed in a map of the United States on the TuDiabetes network, with states lighting up according to the aggregate A1c data. Once a threshold of participants in each state is reached, the state’s color reflects whether the average A1c submitted is within the range recommended by physicians.Our goal is to light up the U.S. with A1c values. We anticipate that participation in this sharing of medical information will encourage everyone in their own diabetes management, and enhance the public conversation taking place on the forums and private exchanges on people’s profile pages.
Through this partnership, members of TuDiabetes will be able to contribute health data safely and anonymously via TuAnalyze, a highly secure application developed by researchers in the Children’s Hospital Informatics Program and based on the Indivo personally controlled health record. Members have the option to select how much information about their A1c values to share - if any. They may have their A1c values grouped with the values of other users and made available for academic research, online charts, graphs and maps displayed on TuDiabetes.org; or make their data visible to whomever can see their TuDiabetes profile page.
Kenneth Mandl, MD, MPH, faculty in the Informatics Program at Children’s
Hospital Boston, associate professor at Harvard Medical School and Principal Investigator of the project had this to say about the collaboration: “Many people are turning to the Internet for information, support, and resources to help manage their disease on a day by day basis. With TuAnalyze we aim to collect and share basic information people provide in a secure, structured way that will be beneficial to the community – so each member can learn more about themselves and their peers – and in a way that may inform public health endeavors and research.”
Analysis of the data collected could determine, for example, trends or a correlation between people’s participation in health related social networking and level of diabetes management. Needless to say we’re very excited! Through TuAnalyze the Community is building a shared knowledge that’s bigger than any one of us.
DHF and Children’s Hospital Boston plan to explore additional metrics in the future, and move beyond the United States to map A1c averages from around the world collected through TuAnalyze.
TuAnalyze was developed with support from the US Centers for Disease Control and Prevention (CDC)
Watch TuAnalyze screenshots on the slideshow below or begin using TuAnalyze now by clicking on the orange TuAnalyze button on the right.
This looks really neat. I hope it expands beyond the U.S. soon so I can participate!
Excellent opportunity for most. Some type 1 diabetics, however, have spherocytosis (and probably are unaware they have it). This red blood cell abnormality renders A1C readings very inaccurate. The test for spherocytosis is a very simple lab process and should be performed on all diabetics whose meter readings are higher than warranted by their (artificially low) A1C results.
Hey Jen,
You can participate now. The data will continue to be tracked and once the Canada map is available, your region woudl light up according to the aggregate value for your it.
Very interesting! Hopefully honesty will prevail for a true refelction of the whole. Most people only like to share their A1C when it’s something to brag about!
Great idea!
Yeah, I saw this morning, and signed up right away… But I don’t think there’s enough Iowans on here to make it light up. LOL And… I would never not share bad numbers, personally, because honestly… If I am doing something wrong, I want to KNOW, and I want to be helped out of whatever I was doing… Diabetes is too scary to ignore, for me… Just my own way of seeing things, I guess.
Completely respectable. That is why there are 3 levels of sharing your data once you have entered it:
- completely anonymous, only for research. This would translate, to the researcher into something like “someome, among all the members of the commnity, entered this point of data.”
- aggreegating your data with others in your state/region. Once a minimum # of members from that region have entered their dta and chose this option, the color of their region will reflect the value of the aggregate of all their values.
- share your data with whoever can view your profile (based on your Settings > Privacy). If only your frienfs can see your page, only they will be able to view your data.
Does this help?
Actually I dislike that an A1c up to 7 is in the green range. In my view this is something that should not be recommended anymore. So above 6.5 should be yellow. Does anyone share my opinion?
Signed up , from Canada …I think I did this correctly …
I also received a comment from a health provider some time ago, since I questioned my A1c results NOT comparable at all to CGMS and BG pokes … those results lower than A1C …possibly my hemoglobin ??
In response to Holger’s suggestion … I think , that there are some variables at play : age,such as mine ,complications , type of diabetes , other ??
I plan to check out VetHost 's comment about " spherocytosis" a new word for me .Thank you VetHost !!
Thanks for the input, Holger. I will make sure to share it with the Harvard team.
Over time, we hope to make the tool more robust so that it can take into acct more biometrics.
Thanks for bringing this up, Nel.
In my case, my A1C tests were in the 6.1 - 7.2 range, but my BG tests were often over 250. Sometimes the meter would simply read “HI” because it was off the charts. Yet, my A1C’s were so good, they had my doctor telling me I was doing great. It wasn’t until my 23 year old daughter – who’s an RN and recently diagnosed with Type 1 – told me to get checked for spherocytosis. She was diagnosed with it and gets the fructosamine test in lieu of the A1C because the former test is accurate, although it covers only about 3 weeks as opposed to A1C’s 3 months.
Hope that’s not too confusing. If you need more info, let me know. I’m committed to help!
I second that.
Manny and co …In the mean time , I carry on to the best of MY know how …I feel generally GREAT , do my exercise , eat well , try to learn MORE here and turn 70 on July 25 !!!..please help me celebrate , as I have outlived my Parents by far ( Dad passed away at age 64 , Mom at age 67 )
Thanks for letting me know, I signed up.
Hmm… sounds odd. Let me report this, John.
Thanks for bringing it up.
Looks like it’s fixed now, Manny. The two tables now agree.
Good! Yep. They got the report last night and worked on it this AM.
Glad to hear. Thanks for the update!