Anyone dislike new pictures/graphics icons on each thread page?

kareenie

kareenie

Musical ~ above is what they look like on my Android phone. I find them inappropriate and intrusive. They seem to be random and unrelated to what you are viewing. They change when you click to another page or thread.

Another "anti" vote!

Anonymous

Kareenie Thanks for that. That is intrusive and inappropriate.

Traveltext said .... All sites and social media do this and you might as well disconnect the Internet as fight this fact.

RUBBISH. That's a kneejerk response and nothing but a polarizing blanket statement. In fact just like unsafe drivers on the road who put ALL others at risk in the vicinity, so is that type of attitude.

I'm here to tell people there ARE things they can do to be safer online if they want, and privacy and security are inextricably linked. Did I say 100% guaranteed safety? No, but you can certainly minimize it. Just like we must put effort in to get a license to drive, so must we to circumvent this nonsense of guarding against people making merchandise of us.

Traveltext

People tolerate social media carrying ads and monitoring keystrokes because they like using these sites. Google makes billions from ads and data mining. Not to mention television, newspapers and magazines having ads as their prime revenue stream.

BCO is a charity, so how do you expect them to maintain and grow such a site without ads to supplement the donations?

ceanna

kareenie, thanks for posting what it looks like on your cell phone--it's the same on a laptop, but I didn't know how to post a snapshot. BCO, it's in the wrong place and totally inappropriate for these intrusive icons and links.

Musical, thanks for all the technical information.

Traveltext, I understand that spying on the Internet to fund open public sites can be expected. I would not have expected it to suddenly turn up on such a personal, issue driven site as BCO (which claims to be donation funded)--especially without them informing me so I can choose whether or not to opt out.

So far there has been no additional response from the moderators. I have read the BCO "privacy and security" information and there is no mention that Outbrain is "behavioral targeting" our clicks. I am offended that all of us users have not been informed about this change in the website and how BCO is using our personal information through Outbrain.

MODERATORS, PLEASE INFORM US EXACTLY HOW OUTBRAIN IS USING OUR INFORMATION, AND WHAT IS GAINED FINANCIALLY BY BCO FOR USING OUTBRAIN. I know BCO cannot run without funding, but right now we need an explanation.

ceanna

Here's what BCO promised us:

This confirms that Breastcancer.org™ is a licensee of the TRUSTe Privacy Program. Because this web site wants to demonstrate its commitment to your privacy, it has agreed to disclose its information practices and have its privacy practices reviewed for compliance by TRUSTe. By displaying the TRUSTe trustmark, this web site has agreed to notify you of:

• What personally identifiable information of yours or third party personally identifiable information that is collected from you through the web site
• The organization collecting the information
• How the information is used
• With whom the information may be shared
• What choices are available to you regarding collection, use and distribution of the information
• The kind of security procedures that are in place to protect the loss, misuse or alteration of information under Breastcancer.org™ control
• How you can correct any inaccuracies in the information

Traveltext

Thanks for posting ceanna, I'm sure we'll be informed about how the information is shared. Of course, we have the choice to leave BCO if we're not happy with how the information collected is being used.

Anonymous

Tolerating ads is not the point. Other than a few legitmate applications I can't imagine anyone (online) knowingly allowing a keylogger to monitor their keyboard strokes. They're about one of the most dangerous things there are if you want to keep your bank details private. Again, making generic statements that aren't saying anything we don't already know aren't helpful. The point that has been raised which you keep missing is what is NOT told to us up front about outbrain and which ceanna has asked for a number of times. It's a good question. We're all adults here and don't need hints from you thanks about voting with our feet.

Advertising that is taking up that amount of space on that cellphone screenshot is certainly too much. I would find advertising that is in your face as described in this thread as offputting and unacceptable.

I noted in the dashboard there were some social media buttons, which can pull data back to base (FB etc) WITHOUT clicking on them whether you belong to FB or not whether you're logged in or not means nothing.

More BCO policy:

11. Social Media (Features) and Widgets
Our Web site includes Social Media Features, such as the Facebook Like button [and Widgets, such as the Share this button or interactive mini-programs that run on our site]. These Features may collect your IP address, which page you are visiting on our site, and may set a cookie to enable the Feature to function properly. Social Media Features and Widgets are either hosted by a third party or hosted directly on our Site. Your interactions with these Features are governed by the privacy policy of the company providing it.

Behavioral Targeting/Re-Targeting
We partner with a third party to either display advertising on our Web site or to manage our advertising on other sites. Our third party partner may use technologies such as cookies to gather information about your activities on this site and other sites in order to provide you advertising based upon your browsing activities and interests. If you wish to not have this information used for the purpose of serving you interest-based ads, you may opt-out by clicking here. Please note this does not opt you out of being served ads.

If targeting is bad enough try re-targeting

I came across someone who was having a battle with the same ads coming up across sites then he went on to explain this:

This ad was delivered thanks to a “retargeting” tracker from a company called AdRoll. Retargeting trackers watch what you do on certain sites – usually shopping destinations – then try to close the deal by displaying ads on subsequent sites you visit.

There's another thing that comes up in my noscript list that Im checking out - rmdy.hm

ceanna

Thanks Musical for your additional insight. In looking through the BCO policies I see the following:

All advertising on the site is will be clearly identified as advertising and is kept separate from editorial content.

I would think that having the Outbrain ads on these threads is therefore against policy. We, as BCO users, are editorializing and should not have our comments used/abused by ads, behavioral targeting, and tracking!

Moderators

Sorry folks, we are still waiting for some information from a few team members. Stay tuned! We're hearing you!

ksusan

I don't mind if there are internal links, though I don't want to see graphics (such as the radiation icon posted above).

I was going to leave this alone, and I'm hesitant to post it, but since BCO hasn't responded yet to the requests in this threads, I'm going to take the risk of talking publicly about a humiliating and distressing experience I had here. I think it illustrates why having unavoidable links/images within the discussion board should be a problem from the perspective of BCO itself.

BCO recently removed two photos I posted. It was in a thread that asked what a procedure would look like--so in a thread with a descriptive title, in a relevant forum, in response to a request. The poster thanked me for the photos, then BCO removed them with a message that "posting that kind of pictures is strongly advised against." "That kind of pictures"? Of our outcomes? Of our bodies? I looked at the community rules but couldn't find any "advice" that seemed relevant in this context. I wrote to the moderators to question this and express how distressing and humiliating it was for me to have these photos removed in this way.

Moderators reconsidered and invited me to repost, which I haven't. I haven't because here's how they explained the removal: "We were not sure if it could be too much for new people coming to the site, so removed them." This is about a photo of my BMX, something I had to do because, you know, cancer. Like the potential new people coming to the site, who can choose to click on a forum or thread, or not. On a cancer support board. "Too much for new people coming to the site," though a new person requested information about this and thanked me? My post-cancer success-story body is "too much"? Mine is considered to be a very good BMX without recon. And whether it is or not, it's what I've got, and I posted in response to a request, just as others have posted when I've requested to see images in relevant posts. This is a longer conversation that could be pursued elsewhere, but I found this "apology" comment deeply distressing and still humiliating. Who was my post-surgical portrait "too much" for? Not the poster, not me, not the many people who ask to see photos and find them reassuring and helpful WITHIN THE CONTEXT OF A RELEVANT FORUM AND APPROPRIATE THREAD. Nobody has to open a thread they think will distress her. Threads can be blocked. Fora can be blocked.

Well, I tell this anecdote to make a point--I happen to find that radiation icon and some of the others viscerally nauseating, even though they're diagrams. Most of us have triggers from this experience, and this is mine. I don't want to see it and except on my main computer, where I can block these images, I keep seeing it within NON-RELEVANT fora, NON-RELEVANT threads, NOT at anyone's request, and UNAVOIDABLE. So my relevant, requested, in-thread photo of my own LOVELY, NO-MEDICAL-PROBLEM, POST-SURGICAL self was "too much" but diagrams irrelevantly embedded in every thread and sidebars, showing medical procedures on breasts, are okay? There's a big discrepancy here.

I understand about both internal links and monetizing the site. I understand that the moderators aren't BCO, Inc. But this discrepancy is a problem, easily rectified by moving all internal and external advertising/site navigation links to a sidebar, and not using images, since a reader is not able to make a choice about seeing them--unlike photos posted by members on request, unlike subscribed or navigated-to articles on BCO.

Jackbirdie

KSusan makes a very good point  

Relevance and requested information must always be considered distinctly from advertising  

It's easy to say if you don't like it you can leave  

Where else would we go for this kind of support? Bco must take into consideration that we are in a cancer site, presumably to get certain types of information. I would like less censure and somehow with the ads give people an idea of what they are getting into before the click  by only allowing such in "relevant" threads, as opposed to everywhere. 

fifthyear

Part of an article from Fortune (not sure if I am allowed to post the link to the article) "The most notable expression of annoyance came from Marc Andreessen, the prominent venture capitalist, who also happens to have invested in digital publications such as Business Insider and Pando Daily. Any serious publishers "should be shot" for using related content links, he wrote, because they degrade the user experience and the advertiser experience. They are a "part of the 'race to the bottom' pervading Internet content," he added, noting that the income they bring in is a short-term substitute for building a long-term quality business."

Don't know why BCO needs to use this type of widgets from Outbrain. It is a tricky business with this site, the BCO. They are using people's experience with cancer to generate revenue for the site. This site is SO personal to all members that this can cause problems for the site. All it takes is someone go on TV somewhere and talk about it. Then BCO will need to be on the defense and another site will pop up and take over. When cancer patients publicly ditch the site due to behaviour, advertizers will leave because they don't want to be associated with taking advantage of cancer patients (whether it is true or not, it is the PUBLIC PERCEPTION that counts).

We all know that in the beginning, the site is very intimate, personal and we TRUST the site. Not sure it is the same anymore. We know they need money to run the site but this is going too far. My 2 cents.

Traveltext

If I posted Google's Terms & Conditions here, we'd all have a cow but likely go on using the site because we trust them to deliver the most relevant results for our searches.

Likewise, I trust BCO with my information and will continue to use their site even if the current modifications remain in place, because they deliver me the best information I can find on breast cancer.

nihahi

ksusan......absolutely spot on!!!! Your experience of having your photos removed and the explanation given sounds heartbreaking, and so very unnecessary, on a site dedicated to sharing personal information and experiences and emotions. Sending you hugs.

ceanna

ksusan, I'm so sorry you had to go thru that. Thanks for sharing.

Traveltext, I appreciate your comment about BCO being the best place for BC information and I agree--I don't know where else I'd go. My concern and the concerns of others who have posted on this thread is about Outbrain and any other tracking/info collecting third party vendors BCO uses and how our personal, private information is being used here. I feel most BCO members feel that BCO should have notified us of their proposed changes in tracking and gathering private information or just not have made those changes in the first place. BCO needs to be accountable to all of us because without us posting private information here, BCO would not exist. I don't have the same expectations of privacy for any public Google-like sites and would never knowingly post personal information there.

Traveltext

".....because without us posting private information here, BCO would not exist."

Only the discussion pages would not exist without us. The main part of the site is the hundreds of topics ranging over hundreds of pages where people go for help with the multi-faceted issues that make up this disease.

I really believe that any information I give up to data collectors or researchers will be more for the good than the bad. If the former makes more bucks for BCO, fine, if the latter helps find better treatments and understand patients needs better, also fine.

blainejennifer

I came here specifically to say that I hate the Outbrain icons. I hate how they look. I hate what they stand for. My family has donated to BCO, because I keep burbling on about how important the support here has been for me.

If you guys need money, ask! Don't monetize our experience here.

Jennifer

MelissaDallas

It is ever so helpful to post links to advanced cancer topics in a thread in "Not diagnosed"when you are desperatey trying to convince a woman who believes she has cancer when clearly she does not that she is okay...NOT.

vlnrph

I was surprised to see these "options" showing up in the middle of a thread. They are intrusive and not helpful, as others have pointed out. I've also noticed that it requires more searching effort to even find the discussion boards, not to mention the name/title changes on the various forums...

cive

You can somewhat avoid the data collection, certainly slow it down by setting your browser to delete cookies on exit. Be aware though that you will then have to always type in usernames and passwords for all sites you visit. To me, that is not a bad idea anyway.

Beesie

Well, I suppose this is an improvement. The big banner on the "All Topics" page has been significantly reduced in size, so that at least now when I click on "All Topics" I actually just see the words "All Topics" poking through at the bottom of the page (on my PC, but still not on my iPad). WOOHOO.

Still, since I never had chemo and am well past my treatment period, why do the Mods (in their Announcements) think that I should be interested in "Tips for Getting Through Chemotherapy"? And since I'm not triple negative, why are they telling me about "Triple Negative Member Stories" (although I'm sure that I know some TN members and so perhaps the Mods think that I should check it out to hear their stories).

I guess the fact that we all come here with our own interests doesn't seem to matter much. More and more on the internet I've learned to focus my eyes on what I want to see, and I'm very good at bypassing and not registering at all the ads and messages that go flashing by on my screen, or that sit on the sides or the top or bottom. The problem on this site is that even when I click on what I want to see, it's hard to find on the page, even with this improvement. And when I do find and focus on what I want to read, as I continue along I am interrupted by BC.org messaging (again telling me what they think I should be interested in but which in most cases is totally irrelevant to me) right in the middle of the page.

There seem to be fewer and fewer new members lately, and fewer who stick around. I don't see how these changes will help drive up usage of this site, or get people to stay around longer and become part of the community.

Blessings2011

Ksusan – I'm sorry that your photos were removed. If EVERYONE'S photos were removed, that would be a different story, but for the Mods to arbitrarily censor yours by using the excuse "they might upset some newbies" is not at all appropriate. I can see removing pics of a breast posted by a newbie, asking members for a diagnosis, but not an honest sharing of what you – and many of us - have gone through.

~ ~ ~

Traveltext said: Only the discussion pages would not exist without us. The main part of the site is the hundreds of topics ranging over hundreds of pages where people go for help with the multi-faceted issues that make up this disease.

Maybe, but not for me. I was on the Discussion forum the minute I was diagnosed. As a Medical Counselor, I knew where to find plenty of data on BC (and did), but what I desperately needed was another person's experience and perspective on what could have been a devastating diagnosis. That's what I found on the Discussion pages. Perhaps others, though, seek them last. Interesting point of view, though….

~ ~ ~

Truthfully, after a long absence from the forum, I barely noticed the photos on my return, and assumed they were an attempt by the mods to remind us that BCO contains a wealth of information outside the discussion boards.

Since I am five years out, I was not tempted to click on any of them, and simply passed them by with no further thought. Today, though, (after reading this thread) I decided to investigate. It does seem that each photo (ad) is linked to a particular area of BCO containing information, although THOSE pages do contain blatant ads from other vendors. I also noticed that the ads change each time I click on one, so there is a steady stream of differing topics no matter where I go in the forums.

Please forgive my stupidity, but are these "ads" just a reminder that there are many resources for us to check out on BCO, or are they sneaky hidden advertising, that will eventually result in my "preferences" being tracked by some giant computer program?

I know I really hate it when I search the Internet for, say, a certain pair of shoes, and then that ad follows me all the days of my life whenever I am anywhere on the Internet. Go away, already!

Traveltext

BCO is obviously trying to direct traffic from the discussion boards to pages in the main part of the site, which is fair enough IMO, but I'm not seeing any ads from outside vendors posted when I go to one of those pages.

Perhaps someone could post a screen shot of these outside ads.

ceanna

Blessings, thanks for your observations. The links/icons from Outbrain need an explanation from BCO and still after 10 days BCO has not offered answers. Initially they said that they were going to change them May 20 but they quickly removed that post on this thread. Outbrain is a known third-party vendor for "behavioral targeting" so clearly they are tracking our clicks on their links. I will not click on them, ever. They are offensive, inappropriate, and a couple of people have noted here how they are traumatized or feel assaulted by the links which have no association with what the thread topic is. Just the fact that BCO is using Outbrain ads on notices of peoples' passing is enough to turn my gut. Weren't these people hurt enough by this disease and now their deaths are being used to monetize the BCO site!!! Repulsive!

Why would BCO desire third-party tracking on their site (other than the income these Outbrain ads provide them) and what are they doing with our private, personal information they collect?????? Why BCO won't tell answer our many questions in a much more timely manner also needs an explanation.

Traveltext, the Outbrain links/icons are ads which when clicked track and record your activity. Outbrain pays BCO for these clicks. I won't click on the icons so I don't know if those referral pages contain additional ads. Big brother is watching thru every click you make!!!!

Beesie, yes I too wonder if new member numbers are dropping. With so much of our personal stories posted and so much information given in answer to earlier questions, maybe people who are finding the site are reading the threads to gather the information they want and don't feel the need to join.

BCO, we're still waiting!!!!

Anonymous

@cive Yes, what you said. First party and third party, obviously you'll need FP when logging in. I also ditch all exceptions too. Additionally I set cache to zero (so much can be extracted from that) as well as zero history. Uncheck every possible browser "phone home" "feature" such as ALL telemetry settings.(FF) I tweak settings in about:config but be careful in there if you don't know what you're doing. If you do then tweak away. Lots of info to be had on the net about this. Suffice to say lots of browser leaks can be tightened up here.

Here's some other tips for those interested. Stop "referrer info" being sent between sites you visit. In other words, sites KNOW where you came from before you came to them, unless you take measures to stop it. This is standard behaviour, but it's potentially another piece of profiling info about you, sold to the highest bidder. Start a new browser session between sites.

or are they sneaky hidden advertising, that will eventually result in my "preferences" being tracked by some giant computer program?

@Blessings, you're not stupid, rather it sounds like you have been yet another victim of Re-Targeting which I've posted about above and BCOs use of it ...... which is worse than targeting ads.

Targeted ads are sneaky. Period. Even though we don't know exactly what outbrain is doing it is plain from that excerpt I've posted above that it's tracking us. Also, pretty sure your profile is open to public view but I'll have to go back and make sure on that. There's probably parts you can have not show.

It's worth noting that people typically excuse this behaviour by saying such things as giving up this bit or that bit of info is OK, but as we can see, the info we give up is not isolated. It is harvested, sold and resold many times over AND in it's aggregate as you venture across the internet, it builds extremely detailed dossiers and profiles on you that is down right creepy.

Unless you take measures to protect yourself, Google knows more about you than your family. I kid you not. They log ALL your search terms you ever made and I wouldn't trust them one iota in that they only keep them for x amount of months/years. Over and over these giants LIE and they'll certainly spill on you under a subpoena and the like. There are a few search engines that are pretty well trusted who promise not to log your searches and don't log your ip address, which is the key unique identifier (but certainly not the only one) assigned by your isp and thus id's you everywhere you go on the net. Don't think you're safe with a dynamic (as opposed to static) ipaddress either as isps typically are required by law to keep detailed logs such as where you've been, how long you've been there date and time etc.

This thread indeed shows that there are many people here who do value their privacy and why wouldn't they. Its our health we are talking about here.

Traveltext

Ive just searched the BCO site for external ads and can't find one. There are some external links, but these are to useful BC organisations and the like. The ads that are worrying people here are, in fact, links to BCO site content. The issue then becomes the selection of these ads by Outbrain, the well-known content promotion company. A quick look at their website shows that they: "Capture your target audience's attention to drive better results for your business". And more, they" Optimize your content, connect with audiences, and create long-term relationships with readers".

I don't believe Outbrain pays BCO for those clicks, since there would be no point. Users go back and forth between the discussion board and the main site on their own volition and BCO would already have their own stats on site usage. Nor do I think that Outbrain have access to all our personal information.

I really don't believe Outbrain would be capturing our keystrokes, rather they would be tracking our clicks within BCO to provide BCO with valuable information on site usage so they can maximise the reach of their content. Plus, of course, attempting to deliver us appropriate links to pages in the main site. And if this leads to a better and more popular site, then it's fine by me. I'm sure BCO will eventually explain what's going on.

As to my privacy, it was likely given up on the first day I started using the internet in the late 1990s. Iv'e owned and managed hundreds of sites and whatever my profile is, it's surely out there. But, to do as Musical suggests and adjust all my settings, clear the cache, change browsers, etc, would totally diminish the usefulness of the internet for me. And to do all this for the sake of my BCO postings would be unnecessary because I'm happy to share with the world whatever I do or say here. Otherwise, why would I put my medical record in my signature?

Blessings2011

Traveltext - I'm on my Windows 10 desktop, so I'm not sure how to do a screenshot. I think I'm supposed to use the "Snip" tool. Let's see if this works. The icon (on this thread) that I clicked on said something about "Low Vitamin D Levels."

What appeared on the screen - in addition to information about Vitamin D - were ads from pharmaceutical companies. Sorry it's so blurry.

Traveltext

Thanks Blessings, I can see that page here:

http://www.breastcancer.org/risk/factors/low_vit_d

But no ads are showing for me, perhaps because of my location. In fact, as I said in my previous post, no ads are showing anywhere on the site for me. Could this be a US only thing?

Are ads on every page in the site? If so, that would be a revenue raiser for sure, and a good source of income for BCO.

Anonymous

Just because you've long ago decided to have your details as common knowledge online traveltext, doesn't mean that everyone else should throw all caution to the wind or to even curtail previous behaviours. In fact I was surprised recently, to see that the majority of people online do not like being tracked. There's also a vast difference between using screen names and real names that can be associated with a dx. Also that dx is not all there is to our medical situation and many people here do not share everything. BCO itself ( I admit, to their credit), warns people not to share certain details. Why would they do that if it didn't matter?

From that screenshot blessings I don't see how that link you clicked is helpful or relevant at all to what you were already viewing.

Just the fact that BCO is using Outbrain ads on notices of peoples'
passing is enough to turn my gut. Weren't these people hurt enough by
this disease and now their deaths are being used to monetize the BCO
site!!! Repulsive!

Can someone post a screenshot of this? Also can someone tell me how long these notices of peoples passing, have been appearing?