Warning about our privacy

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well said! I kept coming to the word "raped" when thinking how it makes me feel. Exploited hits the nail on the head.

Hi all - boy do I value all your points!  Beesie, I completely agree that most users don't realize at first that their posts will show up on google.  So, clearly that should be part of the user agreement - I don't remember that that is?  To me, user agreements are all about managing expectations.

On the forum that I help run, we fecetiously (sp?) are considering opening up a "public" info. room in the forum called "google bait" because then all the posts in that forum will be searchable and the hope is that many more people who need the forum will find it.  So, badboob, if you feel exploited, you are- we all are, we're being used as bait to help promote the site.  But then again, we don't pay anything for the services.  And access to all you  wonderful, knowledgable women (and men) is QUITE a service.  I don't even know if I can put a price on medical tips that make my life more livable, and ones that help me to survive.  I do hope that we all donate as we are able to help support bco.org.

Moving on, and maybe this is bad form, but the bco.org forum isn't the only option, right?  I just chose it because there were so many people here I figured I could get a quick response (yep, that critical mass thing works well) - there must be other, private forum options.  Young Survivors, Komen, others?  I might go check those out just to see what quality of info. is there, frequency of posting and privacy options.

Also, it's possible to mix and match, to have some rooms private and some public, not an all or nothing thing.  I think it'd be an interesting move by the forum admins to give us a few private rooms and see what happens.  After all, the forum is for our benefit, as we live, try to keep living and then, sadly, die.  These are, many of them, extremely private moments that we share with "trusted" online friends. 

As a forum admin (not here), my personal philosophy is "give the people what they want" (within reason) and that the forum be by and for members.  This forum is a little different; it wasn't started by members.  The advantage of the forum on a site started by a doc is that the information part of this site is outstanding.  And that info. sharing is the main point.

And yes anyone can register, but clearly more screening is needed with all the spammers that get in.  At the forum I help run, we screen each and every member to the best of our ability.  Even to the point  of searching for their email addresses on the web, and we have successfully screened out people who shouldn't be there (there are some crazy spammer types who register at umpteen forums under false pretenses).  What that means though is that doctors can't read the private parts of our forum.  Which, in a small field is not a bad thing, as there just aren't that many docs that deal with rare pediatric liver diseases and sometimes members switch docs, get frustrated, etc.  Info. one may not want a doc to see.

Badboob in her long post above had many good points - don't post email addresses or phone #s publicly - heck, in the LF forum we don't even allow that in private rooms - our advice is to PM it to the people you want to have it.  Unless you really do want the world to have it, and some do.

Gotta run, sorry for the small novel, love the conversation and all the points, and badboob, I appreciate you to bits.

xoxo

Amanda 

PS If Kashcraft from Gentech can take our suggestions and change her company policy (to say that cyp2d6 testing isn't just for postmenopausal women), then it seems like the admins here should be jumping all over this constructive feedback and making changes accordingly: e.g. revising the user agreement, adding a private room or two, and fixing that google link to profile info issue or even making profiles private.

If a for-profit can be responsive to increase their business, a nonprofit certainly can, right?  Even with nonprofits, it's still all about business: traffic, use of services and customer satisfaction.  At least in my book.

Beesie--Very wise about the self editing---Unfortunately this realization only comes with time.

I do the same thing--but then, I've been here five years. 

"For me, I realized almost two years ago that everything I say is open to the public.  The board is not what I wish it was.  So I edit myself.  While I try to be helpful in offering advice to newbies and I do discuss certain information about myself, I've kept my identity pretty well hidden and I avoid talking about certain things that are just too private.  There are discussions that I'd like to participate in that I simply avoid. 

But, to my earlier post, I would apply these constraints to myself even if our discussions could be viewed only by members.  After seeing the almost daily presence of trolls (those who've gone to the trouble of joining the board), after realizing that some of our BC sisters are not who they claim to be (don't have BC and maybe are not even women), after seeing inappropriate comments from friends and husbands in intimate threads that really should only include breast cancer patients (IMO), I don't see a whole lot of difference between the public viewing this board vs. the 27,000 registered members.  Even within our membership, this is not an exclusive club of breast cancer patients."

AmyaM --Just wondering how large the forum you are moderating is?

My sister was involved with an Ocular Melanoma board as my neice had it.  It was a very tightly controlled board and even members were very closely scrutinized as to what they could say---but then again it is very rare Cancer and since the board was limited --that control could be retained. 

amyam,

You are right about there being other forums. I have visited and joined some of them. The young survivors forum is just not for me, even though I am considered "young" in the realm of bc. Being metastatic AND young, I really don't want to wade through all the posts about recon, dating, etc because recon as an option disappeared for me in my post mastectomy scans that found the mets. The komen site has very little traffic. It would seem that bc.org has cornered the bc message board market. Having so many users means that our questions and concerns are seen by many and are likely to be responded to by other users.

I LOVE the boards here and don't know what I would have done without them.

Beesie, you are so right that there are whackos and weirdos out there with nothing better to do than sign up for message boards like ours and post spurious and even hurtful information. It is also true that every so often a newer user will come across their own words during a google search that will initiate a mini-meltdown. Still, once their concerns are addressed and the explanations are offered, there are inevitably questions about WHY certain things are NOT private.

I guess I would just appreciate a clearer understanding of the board owners' and moderators' priorities.  It is certain that the #1 priority is the dissemination of information about bc. Offering people touched by bc-either by diagnosis relationship--a place to connect with others is right up there too, I'm sure.  Yes, it IS a free service. The fact that this site gets numerous google hits daily because of what we say in our posts suggests that what we have here is at least a copacetic relationship.

I have respect for the board's moderators and rules and abide by them as I understand them. In return, it would be nice to at least get a REASONABLE EXPLANATION TO A QUESTION INSTEAD OF A SNITTY POST BY A MODERATOR INSINUATING THAT WE ARE IGNORANT FOOLS AND CRYBABIES.

I realize there is a lot to the job of moderating a board like this, but there have been very few actual answers posted in response to many of the posts on the "comments, suggestions" area of the boards. I suppose I should begin looking at that section of the boards like I do the "suggestion box" at McDonald's. "Sure, you can ask/suggest something...just put it in this box. We empty it regularly. Right into the trash."  

Amy,

It bothers me in the sense that she stole a post.  The post itself was a happy uplifting post so maybe it brought a smile to those who read it. 

So no I didn't report it to the said forum.  I want to keep myself as happy as possible and not get into negative things.  Fighting the beast with positive feelings you know.   The person who copied and took my post to another site is argumentative and I don't want to go there.   

I wouldn't even have known that she did such a thing if I hadn't read this thread.  But thanks to this thread we are all informed that what we share here on BCO is shared by the web.  I do hope the admin's have a word with her at the very least. 

badboob, re: "I have respect for the board's moderators and rules and abide by them as I understand them. In return, it would be nice to at least get a REASONABLE EXPLANATION TO A QUESTION INSTEAD OF A SNITTY POST BY A MODERATOR INSINUATING THAT WE ARE IGNORANT FOOLS AND CRYBABIES."

I really don't understand why response aren't made in a more timely and compassionate matter.  For me and my team on the other forum (sorry to keep harping on that, it's just my only other frame of reference for forums) we try to respond within hours, and either incorporate the suggestions or explain why a policy is the way it is, gently.  Snippiness or snittiness is inexcusable, though there are many different perceptions of tone in emails...sigh..

Also, we (Liver Families) have a sponsors forum that is a private room where people who've donated money to make the forum run can have an extra say about how they want things to happen, or even just a place to chat amongst themselves.  It's a bennie for donating, and the forum admins try to be extra responsive to the sponsors.   That might be another option for bco.org, to have a private room for donors, as one of the benefits of contributing the cash that keeps nonprofits afloat.

I wasn't going to chime in at first on this one.  I've known from the beginning that all the posts here are subject to googling.  I've also encountered some very creepy people in message boards, so there are specific pieces of information that I do not include in my posts.  The internet is just like real life in a lot of ways.  Most people are genuinely nice, and there are always creepy people closer than any of us prefer. 

So for those of you just realizing that people can find this place from google, well, it's been that way for the three years I've been here and probably longer.  That's not likely to change, so I'd suggest you adjust your content to fit your comfort zone.  

<><End of public information soapbox spiel> 

<begin rant>

Today I came here to discover that I was logged out.  So I decided to take a gander in google to see what I could see.  And yes, my member profile was visible.  I knew that before.  What I DIDN'T know was that links to my recent posts was included in the public profile, visible to people who are not registered members of this forum.  It wasn't like that in the old format, and I don't like that it's that way now.  For all the features that we've requested and are still waiting for, how did that feature even get on the radar???? 

Some people here are cyberstalked.  Allowing member profiles along with snippets of recent posts is like wrapping us up in a bow and sending us in little red robin hood's basket to grandmother's house.  Yes, I realize that someone with some diligence could piece together all the information available on us by registering and poking around, but for heaven's sakes, couldn't you at least make the creepy people WORK at it first instead of presenting it in such a tidy package????   Do you leave the doors to your office building open at night and hope no one breaks in???   

It's common practice on message boards for member profiles to be available to registered users only.  We lay bare our personal lives plenty enough in our posts.  Shame on you bc.org for allowing member profiles to be in the public domain also.  <end of rant>

Althea, if I remember correctly, under the old format, if you clicked on someone's user name, you were transferred to their profile.  While their most recent posts weren't included in full detail for all to see, what was included was a long list of past posts.  100 of their most recent posts.  Just the titles, but you could click on any title to go to the details.  What we have now provides more detailed information (the actual post) on a much smaller number (20) of posts. 

In addition to your concern about making it easy for someone to find out so much about us by seeing our detailed posts, I also get frustrated because the new system makes it difficult to find older posts.  I sometimes want to understand the background of  someone's diagnosis or treatment before I post my reply to them.  Except for newbies, that's impossible when you can only scroll down their latest 20 posts.  Even looking for a post that is a week old is now an absolute pain.  

So to net it out, I don't like it either.  The current way of showing our profiles and the history of our posts both reduces our privacy and makes it more difficult to find older posts. Sort of a lose-lose.   

Hana, while you are signed in, click on any post you wrote that included your email address, and near the bottom of the post, you'll see the words "Edit" and "Delete".  If you click Edit you can change the post and erase out your email address.

Beesie, your memory is better than mine on this one.  Yes, I do vaguely recall that recent links to a member's posts were available under the old format.  But at least it would've required a teensy bit more effort to be privy to the content of someone's words than the way it is now. 

We all risk some degree of vulnerability to post about our experiences here.  Again, that aspect of cyberlife is the same as real life.  Yet, I can at least close the front door to my house to keep creepy people from wandering in uninvited. I realize that anyone can register here to gain access.  But again, the more effort a creepy person is required to put forth, the more likely that person is to seek targets elsewhere.  You know, like a place that puts personal information from a person battling a life threatening disease together with snippets of recent conversations to give a clear, concise snapshot of that person's life all together on one page available anonymously through google.   

I for one did not find BCO by way of a search engine last year when I was dx.  I was urged to come here by another bc patient. 

As for my privacy I am not one to put my personal self out there ....but.... I do have issue with another poster on BCO copying and pasting MY POST to another forum on the internet. 

Anything we post here can be taken from BCO, copied and pasted elsewhere out there in cyber land. 

That is an issue all our members here should be aware of.  

>>The privacy issue and what is seen in public info on google has been discussed quite a bit and , I believe, understood here, but what about the other issues brought up in this thread?  <<

Well said celia.  I don't feel heard.  I suspect this is a matter of the admins being stretched too thin.  There's too much volume for two people to keep their finger on the pulse of this place.  I've been a moderator for a much smaller forum than this, and I know how tough it can be and how it can feel like such a thankless job.  

There's plenty of material for google to find in just the conversations.  Admins, there is no understanding coming from me on the issue of how this particular software is rendering member profiles visible via google.  I object and I don't feel heard.  Please explain why it's necessary for the member profiles which include recent snippets of conversations to be visible to unregistered users via google.  If I hear one more 'this is how it is and thank you for your understanding,' I will seriously consider leaving this place.  It's the longevity of many of your users that make this place the success that it is, and I'd like to thank YOU for understanding.  

to the admin who replied to my post:

Thank you and I appreciate that you have replied to me, however you have again told me that you are non-profit with limited funds and employees and you are not able to read every post and respond to it, as an answer to the issues brought up here.  The problem i am having with your answer is that you have just made to me the same remarks that I have gotten from the mods before, yet you have not addressed in any way what i actually asked about in my post about other issues.  I even gave an example of one thing i was talking about.  I got the "canned" answer from you.

I think that Althea was spot on when she said that she didn't "feel heard". I feel unheard too.

Lolita, your idea of recruiting members to help is a great one and is on our list.  We do not currently have the systems in place to allow this type of access but we hope to in the future.  Thanks!

Folks, passwords are required on these boards to limit the posting of spam and to allow users to save and access PRIVATE profile information and private messages.