This is a very cool activity! I put my A1c in the NY section more than a week ago. I am not concerned about the privacy of my numbers. not at all. On diabetes websites, in the support groups, it is good to share this information.
Manny,
Here is my problem (well I have lots of problems, but this is my privacy problem). I don’t feel my privacy is properly protected when I participate in social networking. “Ideally” I want to be able to publicly discuss my private information (such as my private health information) without implicitly giving permission for it to be used for arbitrary purposes. It is after all, “my information.” I don’t want health insurance, life insurance companies to use that information against me. I don’t want that information used to deny me a job, etc. And, I don’t think it is right for a medical researcher to harvest my information for research without my consent, simply because it has been divulged.
This is the root of my concern. And this is why I raise this issue with you. If you collaborate with researchers or others accessing information provided on tudiabetes, then users who have divulged their private health information, but never envisioned that use of the information may well find they are upset. And you don’t want that.
Thanks for hearing me out, your very own paranoid and problematic bsc.
Hi bsc,
Unfortunately, because of the way the network is set up (as a public network, which makes it possible for others to find out about it easily and get their questions answered w/o needing to join the network is that is what they prefer), any information posted on public areas of the network becomes visible to anyone outside the network: it simply is something we have no control over.
However, private (or any kind of) information posted under non-public settings, whether on TuAnalyze or on your blog, photos, videos, becomes visible and available to only those people you give permissions to see it based on the settings you choose.
As for the use of the information posted privately on your blog, photos, videos, we don’t have control over how the people you choose to share it with (your friends on the network) decide to use the information. We assume you will friend people you feel comfortable sharing information with.
As for the use of A1c data shared under TuAnalyze, we’re trying to be as transparent as possible about the use that the data will get. If we’re still not addressing this properly, please let me know.
Hope this reply covers your questions. If not, feel free to point out what I missed.
Main reason I havn’t updated mine is my Dr can’t do A1C checks in the office anymore. Insurance prohibits it. I don’t get to know my A1C until I get my yearly bloodwork done as that information has to come from a lab now.
I am sorry to hear that, mostly because a yearly A1c paints a very limited picture (since the value only really is a reflection of average BGs for the past 2-3 months). Have you considered getting the A1c Now test they sell in the pharmacies? I believe it costs about $30 for 2 tests. It’s not LAB WORK-precision, but it’s a pretty close reference.
Yep, going to talk to them next week about this actually. 