Why do you think that the discussion was deleted?

Aaron Rourke’s discussion “Student design concept for CGM signal repeater…I need feedback” in Dexcom Users on Diabetes community by Diabetes Hands Foundation: TuDiabetes…was summarily deleted after generating quite a bit of interest. Why do you suppose that is?

If we cannot bring up legitimate needs in this forum, what good is it? This kid proposes solving an issue in a legitimate way and the site eliminates any signs of it…


I think there's a rule about asking the admins before you post a survey of any sort. I presume if he discusses it through the proper channels, they'd be able to work something out. I'm sort of libertarian about things like that but like the broad application of the rule that probably keeps out spam, etc.

+1 acidrock - That's what I think happened. Here's the rule - "If you want to conduct a survey with the participation of Members of the community (even if it's not for commercial use), you need to obtain permission prior to the survey being published. To do so, please use the "Contact Us" form at the bottom of any page on the site. Surveys posted without prior approval can be removed without notification."

I think what we see here is the long arm of the FDA. No selling, gifting and manipulating of medical devices allowed. Of course this will not stop anyone and in the future we will see solutions: open hardware pumps, open hardware sensors/repeaters and so forth. The knowledge is out of the bottle and with some determination...

Speaking as a member here, the terms of service were put in place with legal advice. It is obvious just reading this. While I have not been privy to the particular advice that led to these restrictions I have a pretty good idea. And the two areas which are important for this community are privacy and protection against harm. As members we have a right to protection of our health information. We don't want people coming here and collecting our information and using without our permission. And we don't want our members to get recruited and end up being harmed in some way.

Now I don't expect that this original poster has any intent in these directions, but if he is truly a student doing a research project involving human subjects then his school should have already required him to have gone through an institutional review board to make sure that the humans involved are protected (both their privacy and from harm). That is the same standard that applies here.

The student asked for advice on a conceptual design. It was not a poll. It was not a survey. He was not recruiting anyone. In fact, it was the commenters that freely expressed their interest and enthusiasm for a simple advance in technology. It was not messing with the device currently being manufactured. It was a simple mechanism for extending its range to make it more useful. I think more than removing it, I am disappointed that none can learn the boundaries of this site when something just disappears...without a trace.

It makes me think that there is more malicious commercial intent than there actually is...probably.

So this is the response to the question...which of course answers a different question while ignoring the original question. I suspect this means that only Aaron Rourke got any notice when they deleted his conversation...too bad. I am also not sure that this response to me makes any sense...since I purposely put it in the general discussion rather than the Dexcom Users to gain info from the wider user community.

We are writing to let you know that we have deleted the discussion "Why do you think that the discussion was deleted?" Given the title of the discussion, this seems particularly ironic..

Our forum may work differently than others. The "Forum" is actually rather a label for the theme of the discussion. By posting in two forums, you actually post to the same place twice, with two different labels. This is a problem because then the responses go to the two separate discussions, creating confusion and making it less like a conversation. We removed the second discussion to make sure that all the responses you get go to a single discussion.


The TuDiabetes Administrative Team

I am still waiting for an explanation as to why the original discussion, which was the point of my question, was deleted. It seemed like a good idea.

Sorry for seeming to have secrecy or malicious intent. That is unfortunately far from the truth.
To answer your original question--we CAN bring up legitimate needs in this forum. This community was made to help share information, stories, knowledge, camaraderie, and support. As such, we encourage ideas like this to come from our members! When a discussion like you mention (the CGM repeater concept, for example) is removed, we contact the OP to let them know about the necessary information that is needed before something like that can be approved for posting.

As Karen (above) mentions, within the Terms of Service there is some guidance on posting a survey--in this case it was not an "official survey" with a URL link through survey monkey or some other hosting software, but rather an informal inquiry. Unfortunately when mentioning that it is for a class or some other institutional purpose, it brings HIPAA into the loop.

As Brian (above) mentions, we (as a community) have a reasonable expectation to privacy. When folks (knowingly or unknowingly) come into the community and offer to take our information without a formal consent, then that is a potential violation of HIPAA. The terms of service were set up in such a manner to try and still allow these types of postings that you mention (the CGM repeater concept, for example), but within the safety of adhering to the rules.

We would encourage this type of posting, actually. But these types of posts must go through the necessary steps to ensure that they are free and clear from violating something as serious as HIPAA (there are very hefty fines for HIPAA violations, and one instance like this can be applied to every individual who may reply...there is a range from $100 to $50,000 per violation fine gets out of hand very quickly, as you can imagine).

And yes, our forums operate slightly different than other sites. Posting to a group limits the initial "view" of that discussion to that particular group. However, accessing the forums page will show all of the discussions from all of the groups, regardless of whether you are a member of that group or not. So if you post in a group, and then post in a general area (such as the General Diabetes Topics, like you have done here), both discussions show up on that previously-linked forums page. This can cause confusion because someone may reply to one but not the other, and valuable dialogue can be lost. As such, when something is posted more than once, it is typically the policy to remove one of the postings to try and prevent that confusion for the OP as well as the general membership of the community.

I hope that helps to clarify some of the questions that have arisen from the removal of the CGM repeater discussion. And I also hope that the OP of that discussion will take the necessary steps to be able to post again, because I thought it was a great idea/post as well, and is worthy of discussion.

The student would get a plethora of information if he would read the forums and gather information from real user experiences, knowledge, and use. I am one who is annoyed requests from students to answer questions. I always wonder what the source and reference lists look like on these things. Good luck to the student.

They said I was conducting a medical study without permission. I asked for clarification, but they have not returned my email. UPDATE: I am still working on project, first prototype should arrive tomorrow. Now I'm working on my senior project display and looking for stories and photos of real people dealing with the nighttime monitoring issue.

I had a post deleted (on another topic). I asked what could possibly have been objectionable about my post. This went back and forth a couple times, but the admin I was talking to refused to tell me which admin I was talking to, and refused to tell me what was objectionable about my post. I think anyone who has a post deleted deserves at least that.

In my case it was my post that was deleted, even though it was the person who responded to me who started calling me names. So I think it is clear that some people can say anything they want, but other people have to be careful. Unfortunately you and I would seem to be in the latter category.