All Journal Entries Journals
Previous | Next

Medhelp Privacy -NOT

Jul 07, 2008 - 18 comments

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.

Comments
Post a Comment
Avatar universal
by sadinmichigan, Jul 07, 2008
wow...well it appears that someone is messing around because peoples moods have been changing without their knowledge..How would that happen?? I had just put up that (in my mood box) it seemed moods were being changed and i was contacting med-help...now all of the sudden my mood has disappeared and I did not touch it..there were some other mood things that happened this weekend and caused a bit of an up roar.some quite nasty...I guess I need to rethink this "friend" thing..I don't have to have an official friends list to still talk to people..what do you think..lol.Thanks for writing this..

535822 tn?1443976780
by margypops, Jul 07, 2008
Thank you for letting us know I have read it briefly and am going to do that again and digest it. I can understand you calling your Place Eden, the pictures are great, I too am an avid gardener and Nature lover, maybe there is a site for us to go to, I have had 2 snakes in my Garden and the Internet cannot tell me what they are also I have looked at all the Books.Would you know of a forum for Nature Lovers?

366811 tn?1217422672
by JSGeare, Jul 07, 2008
Sandi: Sometimes it happens that a technical glitch will play havoc with user data but I must admit that while I can understand that a mood might disappear (failed link to user info or some such) I do not know how a glitch can change one mood to another. If others have had this happen, I hope they will post details here. Pass the word, if you don't mind.

mary: you might want to consider allexperts.com for a site with nature related material -we frequently go there to seek info about our pond, the fish, etc. As to the snake, if you can post a picture and let me kniw where ytou saw the snake, I'll take a guess. Otherwise, just type "identify snake" in google (no quote marks) and have fun. If any of the material in my journal was unclear please let me know and I'll do my best to explain.

Avatar universal
by barfer, Jul 07, 2008
Wow!  I'm speechless!  So much for privacy.  Kind of makes you want to move on or only contact people through private email.

Avatar universal
by 10356, Jul 07, 2008
I appreciate the time it took to write this, as I find it interesting, explanatory and informative. I will never forget this lesson...   Thank-you    

404138 tn?1308941656
by AnxiousGurl, Jul 07, 2008
Thanks JSGeare, by chance do you know how to go about getting rid of our profile, or posts even?

Avatar universal
by sadinmichigan, Jul 07, 2008
apparently med-help took the mood off because i wrote that moods were being "changed"..they didn't want the forum knowing that until they investigat..however the things that transpired this weekend were of a different nature..and mood boxes were being tampered with..i will pass it along..through pms..thanks

495284 tn?1333894042
by dominosarah, Jul 07, 2008
thanks for taking the time to write this.  Alot of information.             sara

393165 tn?1420760445
by sunset555, Jul 07, 2008
Thank you so much JS for all your very informative info!!! will take the time to digest it properly later!! Sharon

366811 tn?1217422672
by JSGeare, Jul 07, 2008
GJ007 -and others:

Thanks for your comment on my post about privacy. Making profiles and posts go away is tough. Assuming there is no reason to do so from an abuse standpoint (in which case the material -and sometimes the person- is booted) Medhelp needs to keep everything there, because it is what they offer to the members and advertisers: our thoughts and feelings and ideas. On the other hand, if someone mistakenly posts something that might end up putting them at risk (phone, location, etc.) the member may ask Medhelp (or a CL) to delete it -and they probably will.

User profiles are linked to user posts, comments, PM's -anything at all originated by the user. If the user herself were deleted, all that material would become "disconnected." And so, the "user" must stay on the system. Nonetheless, the user profile may be changed, by the user, to eliminate as much personal info as you care to toss out. Your profile, for example, doesn't have much in it about YOU.

Journals are a particular area of interest, because many people disclose personal information about themselves that could enable someone else to track them down or contact them outside Medhelp. But you can, of course, delete your journals. Are they truly gone, if you do? Perhaps so, perhaps not. For a time, they unquestionably survive as magnetic (or optical) traces on a hard drive or other storage device until other data "overwrites" the material -same as material you delete from your hard drive. But MH may also possibly keep them as an historical record, in case, for example, material were accidentally deleted and needed to be restored or was subpoeaned by law enforecement. I really don't know. All we can say for sure is that your material is deleted from the VIEW of others. If it were my system, I would dump the deleted material to tape or disc or a physically separate system- and remove it from the active system database. In its place, I would leave a marker saying where the material was stored (viewable only by me and authorized personnel). If you follow that link (http://vitallogs.medhelp.org/blog/) I mentioned above, you'll also see a discussion of the technical challenges Medhelp faces in terms of dealing with data -GOBS of data. Evidently, they are deploying "Rubies on Rails" or some such data blasting software to do a better job of it.

Good thing, too, because as you may have noticed, Medhelp is S-L-O-W. It is not your imagination. Alexa.com -a company which reviews performance of websites, says: 71% of the websites they survey (which is 1000's) are faster. If you go to www.alexa.com and search for Medhelp, you can learn other fascinating information. But beware, some of it is out of date (they still show medhelp as a dot "org" when in fact, MH has been "for profit" for quite some time now.)

Hope this helps.

393165 tn?1420760445
by sunset555, Jul 07, 2008
Hi JSGeare,

I have now had a little chance to read your journal properly, and the main overall topic is the uncertainty about how private our privacy really is here on medhelp.

For example, when I was approached a couple of times through my own PM by total strangers, I did feel a little uneasy almost like my privacy had been invaded, and so didn't feel very secure in the knowledge that "Anyone" could just PM me at any time they felt like it.

So yes, I do agree when you say that even our PM's are not that private as anyone of our "friends" to which we send PMs to, could very easily go and copy and paste our response messages onto a "public journal" no problem, if they wanted to do it, there is absolutely "nothing" to stop them. Also have you ever thought of the journal facility, as being just kept private for ones self as opposed to sharing with "All" of Medhelp, that way the person that is writing up his/her journal has to choice/option of whether or not they want to make this journal entry public, and if they "do" well all they really have to do is go straight into the forum connected with whatever it is they are talking about and just print it there, then on the otherhand if they do "Not" wish to share it with anyone else, they can just basically store it themselves in their journal entry section, if they had the facility to do this!

Another point you made about how public we really are as opposed to searching through Google or whatever, that absolutely fascinated me totally, so I went into the search engine that I generally use which is Yahoo, and guess what I typed in Sunset555 Medhelp, and counted a total of 100 Pages full of stuff about me, then I typed in JSGeare Medhelp and counted an additional 100 Pages of stuff about you. I don't know about you, but I was absolutely "gobsmacked" when I saw so many things up on the internet live about me, about my posts and above all the photos showing my kids and my family, I did feel very open indeed and very invaded even though I wasn't even aware of the fact that you could access information about myself so easily obtained by pure and total strangers. So yes JS this was the most vital point that you have made accross to me today. I even felt like going straight into my medhelp and deleting all my photos with my kids and family in it, but then I said, no don't be so foolish, and got over it. But yeah, a lot of weirdos out there sure do have some lengthly access to everyone and anyone they set their sights on! What an eye opener it sure was for me and I am sure for everyone else too!!!!

You are also very right in saying that there are also a lot of companies and people out there who are basically just touting for customers/consumers and will probably just go in and look into sites like medhelp looking  for the right catogory of person to send on their information and website addresses to, I never really sat down and thought about this one, and I am quite surprised at myself as to why I didn't as this is the most straight forward point that you have made today, and one to which "everyone" particularly on this medhelp site should be very aware of!!!! and thanks to yourself after today, a lot of folk out there will be a lot more wiser and cautious in the future as to just who they are giving out their private and confidential information to without thinking twice about it!!!!!

Anyway, I will leave my view at that, but you made an awful lot of sense as always today in your journal, which I truely value! and I am sure that you will be getting tonnes of replies to this, it will probably be the longest running response journal ever to be known on the Medhelp Site.

Many thanks again, for all your input and advice and of course knowledge.

Sunset

460185 tn?1326077772
by lonewolf07, Jul 07, 2008
Does this mean that my pretending to be a depressed and anxious person when in reality I am a spy for the Canadian govt trying to gather information about the imminent takeover of the USA by Canada is not a secret?  Does anyone who can Google know that we are going to force you to speak French and live in igloos?  Do they know I'm from another planet?  That I'm trying to steal millions and millions of dollars and this is my illogical way of doing it?  Do they know I'm a big-time gangster?  Or that I'm really Elvis?  Oh no .... my cover is blown.

Nothing is ever really deleted even if we push the delete button.  Some cyber-expert can retrieve it.  Sad to think we might have to design our own anti-spywear and/or encrypted ways of communicating.  I'm sick of being exploited.
READ THAT SNOOPERS ....  lol    Must go now.  Time to prepare for Canada declaring war on the USA.   For more details watch "Canadian Bacon".

If anyone believes that, I have a bridge in Brooklyn for sale - cheap.

TTYL

Bond - James Bond (who was really an Inuit woman with one leg and three arms - just Google and find out)




366811 tn?1217422672
by JSGeare, Jul 08, 2008
Took the bait, didn't you Wolfie? I just KNEW we'd flush you out. Ha!

-S

165308 tn?1323186545
by suzi-q, Jul 08, 2008
WOW!  Thank you!  I just deleted all my info.  I feel bad doing that, but now that I saw my pics and other personal stuff that can be viewed by others outside of medhelp, I am going incognito.  No more pics...I hate to say.  Thanks

470885 tn?1326329037
by Limonada, Jul 08, 2008
This is how I found MedHelp, by Googling medical symptoms in my heady health anxiety stupor - so I'm not surprised ;-)

603216 tn?1244710593
by BJ_1, Oct 31, 2008
Wow, just caught up with this info and googled myself.  Came up with the following:

Dr. Visit - BJ_1's Journal - MedHelp  In this journal about Dr. Visit, BJ_1 discusses experiences, knowledge and provides help to other members of the MedHelp community.

Seems journals are scrutinized somewhat and summed up for all to view on the internet.  I'll delete my private info.

Thanks everyone, it makes me think and ponder what I put on the site.

458072 tn?1291415186
by peggy64, May 26, 2010
good info. Thanks for posting this, (2 years ago i know) but still good.

535822 tn?1443976780
by margypops, Jul 16, 2011
Is  jsGeare still around .. I never posted him the pic of my snake ...

Post a Comment