Medhelp Privacy -NOT

I've received so many questions about privacy on and in Medhelp that I believe the time has come to disclose as much about it as I know, or think I know.

The bottom line: very little -maybe NONE- of what we write on MH is private. By design, MH is a very open community. The only exceptions to this of which I am immediately aware are photos and journal entries which may be marked as visible to only you or only your friends (or the default: "everyone"). PM's are also, by nature, "private."

But under normal circumstances, everything else can be seen by everyone. Someone clicks on your name (appearing on a post or a comment, for example, or found by searching) and that person sees your personal profile page. And there, they see everything YOU see, with the exception of private pictures and journals and your PM's. Of course, they can't CHANGE or delete anything -but they can see it. Thus, someone who is trolling from one forum to another may browse around for someone who might be responsive to something for sale, a referral to a bogus web site, or perhaps a personal appeal of some nature.

Don't take too much comfort from the idea that your PM's, (and photos and journals marked for "friends eyes only") are truly "private." YES, they ARE private as long as they stay in the form of PM's, private photos or private journals. But the CONTENT can very easily become public. How? Simple. Let's say that I'm your friend, and you have some journal entries that are visible only to friends. I go to one of those, copy the material, then paste it into a post, a PM, my own public journal or an internet blog on some other site. Yes, the journal ITSELF is still private -but the content is now "out there." Same with PM's. Same with photos.

But your friends wouldn't do that would they? Depends on the friend. Some people make it their business to become a friend because they have a special agenda. And some friends have a genuine motive -but you end becoming angry with you for some reason. And let's face it, making friends on MH is about the easiest thing to do on the site. I've got TONS of friends with whom I have never exchanged a word. I guess they're my friends, anyway.

We have the sense that our own association with a particular community or groups of communities, be it Anxiety, Diabetes, of MS or whatever, somehow defines and isolates us from others who have different associations. What the devil is someone from "Relationships" doing here in "Cardiac?" In fact, the distinction is just that -entirely mental. Anyone from anywhere (even a nonmember of any forum, a complete outsider) can look at anything, anywhere, anytime. You might be surprised to find me in the sewing, fabric and notions department at Walmart. But there I am, looking for stuff for my model railroad. There's no "keep out" sign, no membership required. Same with the communities of MH.

This goes deeper. MH, being as popular as it is, and being as connected on the internet as it is (all those doctors and medical institutions) ranks very high in Google search results. It won't be long before this journal entry will appear on a Google search for something like "Privacy Medhelp." Want a wakeup call? Go to Google, and search for your handle and Medhelp. For example, I searched for:

JSGeare Medhelp

and HUNDREDS of citations came back Oddly, dozens of them (at least, dozens -I didn't check them all) actually did not refer to a MH page on which I had contributed anything at all. But many did. Does this make me famous? Or does this expose me to people who want to find folks like me -folks who perhaps face a medical challenge and might be responsive to some special offer of help? Of course it exposes me.

Try your own nicname (followed by Medhelp) and see what happens.

You might also try entering the term, Medhelp, and then some key words about disorders and conditions. Play around with it, and notice how easy it would be for any outsider to zero in on people posting on Medhelp. But of course, you must know to include the word "Medhelp" to make this happen.

Google and other search engines will report most anything appearing on Medhelp -EXCEPT for your PM's and photos or journals marked as "private." The reason for this is simple enough: Medhelp wants more members, and one way to get them is to have a big presence in the search engines. But there's a catch, here (for Medhelp): If you Google for a phrase which you know ALREADY appears in a post or journal on Medhelp, you will probably see the link to it in the top ten of Google's results. Try it for something you have actually posted yourself. The point is this: someone who searches for that exact phrase has ALREADY seen the material, or, in the case of asomeone who has NOT seen it, simply used the phrase by complete coincidence. But more general searches, such as "anxiety support groups" will NOT put Medhelp in the top citations. Medhelp, no doubt, wishes they did come to the top on such queries. So, for those of you who are alarmed that what you said will be found by Google may take some comfort from the fact that whomever is looking must search for EXACTLY what you said, word-for-word. The only people who would know EXACTLY what you said are those who already have seen what you said and the occasional coincidence.

Bear in mind that what Medhelp has to offer the members is not just the functionality of the web site, but the content provided by the OTHER members. If everything we say is kept hidden from public view or search engine queries, it is worthless -no one knows we exist. In a very real sense, each of us is a contributor to what Medhelp relies upon for its popularity, with both users and advertisers. We actually "build" the site. It can't possibly succeed as a commercial venture unless it is highly visible.

The same kind of cyber dumpster-diving used for info about members and their conditions may also be used to locate information about Medhelp ITSELF. The Medhelp software engineers recently advertised for some special help to whip up the trackers we've seen implemented recently. They placed an ad you can see here:

http://vitallogs.medhelp.org/blog/

If you read through the material, you will notice a link to one of the community members, provided to give the job applicant an idea of what a typical member of MH is like. Does that member know this has been done? Should he or she? For all I know, that member gave permission for the reference, or is an actual Medhelp staff member, or else is a creature of fiction, made up to represent a typical member. I don't know and I'm not going to ask anyone. No way they would choose ME as a typical member: an old guy who plays with trains and thinks about beans. Not going to happen.

But the link above is one way to get an inside look at what's going on in the Medhelp front office. How did I find it? Simple. I just Googled for "medhelp" (WITH the quote marks). It was the 5th citation from the top. That wasn't difficult, was it? That same search returned this interesting URL:

http://www.quantcast.com/medhelp.org

which will give you interesting statistics about the MH members. This is the stuff that MH "sells" to advertisers. How do they guess at our average annual income? Beats me. I never told them about the million bucks in gold bars I carry in my shoe.

My point is that your "privacy" while perhaps not directly or personally violated by any of the above examples, may not be quite as closely guarded as you at first imagined. We have a "sense" of privacy. But we don't have it in the same sense that the stuff hidden in a shoebox in the attic is "private." Not to worry: its that way all OVER the web. I don't care where you go, it takes money to run that place and the bucks come from advertisers who suffer under the delusion that the members will be persuaded to buy their stuff. And its that way wherever access to the media is free. Radio and TV advertisers spend a lot of money on US trying to figure out how much we have to spend on THEM. I'm covering this territory because several members have expressed to me their umbrage and sense of insecurity about their high visibility on MH and in Google and indeed, as a commodity in the Internet "numbers game." But if you imagine that you are somehow more anonymous on Yahoo or Hotmail or elsewhere -think again. You may have a perfectly valid complaint -but the violators are all around you.

While you may have some discomfort in comprehending the business side of the MH house -and your role as a commodity- the biggest problem in terms of direct privacy violation is sitting at your keyboard: YOU. ME. ALL of us. The BIG exposure is disclosure of our private emails, our phone numbers, our mail addresses and physical locations OR SUCH OTHER INFORMATION AS MAY LEAD TO THIS DATA. With few exceptions, NONE of us actually have known each other personally when we do this. Instead, we evaluate what we are told by others about themselves, and make an educated guess as to our personal safety in "connecting" with them. This is by no means accidental. Medhelp, in fact, calls itself a "social" networking site whose members are drawn together either by health conditions which they have, or in which they are interested. Sure, you show up here because you've got a condition. But, what makes you STAY here and come back again and again? The connections, the friendships ... the PEOPLE. But there are also others who show up and present themselves as trustworthy, decent folks -but who carry a special agenda. SAME AS LIFE.

Perhaps because I once made a living messing about with the web, I'm aware of this situation and have absolutely NO expectation that Medhelp should intrinsically be any "safer" or more private than any other site. And my personal approach to the whole privacy concern is to be very public about who I am and where I am. I don't show pictures of my home or myself because I imagine they are safe from the view of bad actors or just pure commercial interest, and neither should you or anybody else. In my case, I simply have nothing to hide, and really don't care who sees or learns about me. This kind of openess is also encouraging to folks who WANT to trust me -but are unsure. I'll give you everything you need to call the cops.

If you, however, need to be running in stealth mode, you should impart as little about yourself as possible and be wary of disclosures even if they are made "privately."

This brings us to the visibility of our PM's, private journals and private photos to Medhelp itself. Can they see that stuff? Of course they can see it -it is their system, after all! And if you take the time to read the Terms of Use (click the link below) you will see that what is says, in a nutshell, is this:

THIS IS OUR TOY. YOU CAN PLAY WITH IT IF YOU FOLLOW THE RULES, WHICH WE CAN MAKE UP AS WE GO ALONG, IF WE WANT. WE CAN USE ANYTHING YOU SAY FOR OUR OWN PURPOSES, JUST AS THOUGH WE SAID IT OURSELVES. IN FACT, WHATEVER YOU SAY FALLS UNDER OUR COPYRIGHT. IF WE DON'T LIKE WHAT YOU SAY OR DO, WE CAN MAKE YOU GO AWAY AND WE MIGHT EVEN CALL THE COPS. PLEASE TELL US IF ANYONE IS MISBEHAVING. WE WANT YOU TO FEEL SAFE AND SECURE BUT NO WAY WE CAN GUARANTEE IT.

Pretty much what all the web sites say.

If we assume that they are honorable folks at Medhelp, then we WANT them to be able to see our privates, as it were, in case people are doing bad stuff. Do they make a habit of looking, just for fun? Perhaps it has happened, but given the huge amount of material in the MH system it would seem a waste of time, and anyone who has that kind of time probably has TOO MUCH time on their hands. That leaves the technicians who run the equipment. Last I heard, Medhelp uses an outfit called "Rack Space" (www.rackspace.com) to host the web site - this is a company with a big connection to the Internet, who rents space and/or equipment to companies with web sites. The technicians may or may not have access to the Medhelp content and software controls, but it would not surprise me if they do. And it would not surprise me if one or two of the tech staff had "hacked" the Medhelp site just for fun and games. I cannot say this is true in this case, but I can say it is true in some cases because I have seen it. And so, while there may be a technical and even legal privacy violation, it is probably meaningless in terms of a threat to you. But be aware that it is a possible exposure.

While some of this may come as a revelation to you, it is important to understand that the situation with Medhelp is hardly any different than the situation at other forums or sites with a membership of some kind. But the reality of your "privacy" may be very different than what you thought it was. So, now that you know, be guided accordingly. Here, at Medhelp. And EVERYWHERE.