As of today, eight US states have lit up on the TuAnalyze map (CA, TX, FL, NY, WA, IL, MA and VA). Nearly 700 members have shared their data (almost 500 from the US and 200 outside the US) and almost 550 of the whole group have selected the Sharing Option that results on their A1c getting aggregated with others’ and displayed anonymously on the TuAnalyze map (Grouped or Grouped+Profile, as shown below).
By all means, this can be considered a great success so far. But we can paint a more complete picture of the community the more the community participates entering/sharing their A1c values.
So, while I completely respect each personal decision (to post or not post, to share or not share), I wanted to put out the question to those who may not yet be sharing their A1c value(s):
What has prompted you to not share your A1c?
Are you concerned about the privacy of your data in any way?
Any other reason why you may prefer not to share your A1c? (not feeling happy about the number, anything else?)
To those of you who have chosen to share your A1c on TuAnalyze, it would be equally useful to learn why you chose to do so.
Thank you ALL so much for your valuable feedback!!!
I entered my data on the 1st day. BUT how do I display the map with the 8 US states lit up. When I go to TuAnalyze & select Map I get a lovely map of the USA with all the states shown, but none have any color indications of the Aggregate A1C values.
Am I missing something obvious. You say OR my state is not yet eligible but I don’t see the other 8 either???
If you entered your A1c data (I see you are in Oregon, from your profile page), all that needs to happen is that a total of 20 people from Oregon do the same. As of this morning, there were 6 people from OR who had entered their A1c.
If you can help us rally the rest of the OR folks, here is a link to the page listing all members from Oregon on the community: http://bit.ly/9DIYHN
I chose to share. I post my A1c on my TuDiabetes page, and I think it’s important for research. I think it would be really interesting to see if tehre’s some sort of pattern across the country (though, obviously, this isn’t random data, so I don’t know that we could take too much from it). I wonder if I could just sign up in 20 different accounts, since that’s probably the only way Alaska’s going to show up on the site?
I agree that a lot of people with diabetes do not have access to the internet (or prefer not to participate in diabetes social networks). This is not only the case in NM but pretty much everywhere (it gets even more challenging in Latin America, believe me!)
The easiest way is to tell people at your doctor’s. We can send you 4x6 TuDiabetes cards to share give to your doctor if you want to. Simply email volunteers@diabeteshf.org and we will gladly mail you a stack, i.e. if you want to. You don’t have to. I am only suggesting a way in which we have successfully reached out to other people with diabetes who are currently members.
I just don’t feel I can post my latest A1C - because I haven’t had a recent one done…being a new mom is time-consuming!! But as soon as I have a new one taken, I’ll be sure to post.
Doing one more “account” on line associated with a social network does not appeal to me. But then, I’m in an older generation! I could help out the averages of 3 states this year!
i chose to share my results. not worried about privacy concerns for this type information. I chose to share it simply to increase the amount of information available. the more researchers know, the data they can trend and analyze the better long term outlook for therapies.
I entered my data after reading about TuAnalyze over @ Amy T’s site (Diabetes MIne).
I shared my data because I felt I could do so with privacy.
Among the other reasons given for NOT sharing are these: I don’t really see what the value is. Sharing the data may have some obscure value to me in the future, but I doubt it. Therefore, I don’t have anything invested in it. I felt the interface was a bit klugy by making me jump through a couple of hoops BEFORE I could provide the data.
As someone who has conducted research and been a gov program manager of research, I see no way that any significant research can be conducted on the one variable “A1c.” What is the context? What would be the research question? If ID is protected, how would you correlate it to age, gender, type of diabetes, etc? Research is great but only if it is real research, with sound questions and enough context and data to answer the questions scientifically. Furthermore, suppose you obtain the average A1c of TuD members. What does that tell you? What question does it answer? An average means nothing by itself. Just my 2 cents.
