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

Jackbirdie

I became concerned about the outside use of what I thought were "private" posts I made here some months ago and found this research paper, which makes reference to a "breast cancer support group". See starting page 9.

http://kraut.hciresearch.org/sites/kraut.hciresear...

One of the authors, a Moira Burke and her co-writer, Robert Kraut, are connected specifically with bco here in this second link. I assume therefore that bco has in fact shared our information long before now.

This incident, which is dated some years ago, will give you a haunting idea of what researchers are doing with your information, and for how long they've been doing it.

Edited to fix link.

Thanks, Beesie, for that info and explanation. I understand now that I have been quite naive about this. I expect though, thatmany of us are, or were, unaware of this practice.

Beesie

Musical, here you go:

How inappropriate (and I'm struggling to be polite here) is it to have a link to "6 Breast Cancer Risk Factors you CAN Control" placed immediately below the notice of someone's passing from breast cancer? The other links (for example "What are the Signs of Breast Cancer?") are not exactly helpful or well placed in this forum either.

I don't like the placement of these ads/links, in between the originating post and the replies. But separate from that, if it was decided that this is going to be done, someone should have done the work to ensure that the links placed in each forum are appropriate to that forum.

.

Jackbirdie, none of our posts are private. This is a public discussion board and everything we put on the discussion board is in the public domain and can be 'stolen' by anyone, or given by BC.org to whomever they please. When I google my screenname, I find my posts on all sorts of other websites and blogs. Our Private Messages are private (at least I hope so) and I believe that our Profiles are private. This however wasn't always the case; the change to make profiles private came about a few years ago as a result of the concerns of members when they discovered that some very personal information that they were including on their profiles was available for anyone on the internet to see.

Traveltext

JB, that link in your last post is to a flight booking page.

Meow13

I don't like it either.

Jackbirdie

travel- I fixed the link. Thanks.

Traveltext

Beesie, likely the link placement is automated in the site code. They could, with not much work, exclude pages, so perhaps request this.

JB, As Beesie says, the posts are very public and easily searched on the internet. IMO, that research paper was very interesting and useful in the study of online communities.

I noted this at the end of the paper:

Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the authorship and/or publication of this article.

Anonymous

Beesie, thankyou for that screenshot. I agree that what I see there is certainly inappropriate, and I have more than one bone of contention about this.

Haven't had time to look properly yet about our profiles. I most certainly would hope our PMs are private as well. A few years ago I made the call to instantiate https on this site. Not long after, it was, but they may have wanted to do that anyway. That should make things a whole lot more secure but depending on the strength of the encryption and other factors means it's not necessarily bullet proof. Some are saying, for example, the whole certificate signing process (which happens in your browser seamlessly under the hood) is essentially broken. Quite a complex topic so I'll leave it there.

I can just make out some of the text on the screenshot and see it's in the Stage4 forum. Are those notices of passing only there or randomly anywhere?

Just before I came across yet some more news that involves tracking to new levels.

Jackbirdie Beesies right about this being a public forum, however there are rules about copying and re-posting content. BCO's copyright info needs clarification, but thats possibly veering off-topic though it's relative.

Beesie

Traveltext, yes, I have no doubt that the links are automated. And I've noticed that they cycle through a series of ads / links - if you open the same post two times in a row, you will get different links each time. But eventually they cycle back to the original ones.

I'm sure the code could easily be rewritten to exclude certain pages from getting these links. It would likely be more difficult to target messages to only pages where those messages are relevant, but I'm sure that could be done too.

My point however was that the thought should have been given to this before the ads / links were launched on the site. Why is it that members have to point out the inappropriateness of the placement and subject matter of some of these links / ads? Isn't it glaringly obvious that posting a link about breast cancer risk factors and prevention isn't appropriate in many of the forums here where women (and men) already diagnosed with breast cancer are dealing with issues related to their diagnoses and treatment? Or that links about chemo and radiation might not be appropriate or particularly reassuring in the "Worried but Not Diagnosed" forum? How is it that nobody thought about this back when the idea was in development? Trying to fix this after the fact is a lot more difficult, and more costly, than getting it right in the first place.

Traveltext

Yep, anything to do with the new ad system can be changed and sure they could be more consultative. But, since ads are ubiquitous across the internet because someone has to pay for the provision and maintenance of content and the technical support, how much should we push back against BCO on this issue? Would we prefer an annual fee to use the site? Are we too reliant on generous donors?

Perhaps more important issues are: Will advertiser's products get promoted editorially? Will criticism of advertiser's products be tolerated?

Knock, knock, anyone at BCO listening?

nihahi

traveltext, since you state that apparently you aren't getting the same ads/links, perhaps your "not bothered by them" thoughts carry a little less significance to those who are seeing them and are seeing them on highly inappropriate threads. Yes, providing and maintaining internet sites does carry a cost, but that does not excuse insensitivity to your target "audience" either. In response to your "how much should we push BCO....?" Why shouldn't we? There is already so much appalling well-meant but insensitive/hurtful messaging "out there" in regards to bc, that it seems especially painful to find it here, where so many come to be not just educated but emotionally supported and understood.

BCO has (imho) well identified areas on the site for education, investigation, searching, etc for BC info. Those "pages" would be perfect for the links if the purpose of them is to move people around the topic(s) of breast cancer and related issues. Just like a Google search does, when you enter that scenario.

The Discussion threads, serve an entirely different purpose. They are by and large, a personal meeting place for sharing what the dx, tests, tx and experiences have been to us, as individuals. The "educational aspects" of the discussion threads are person to person exchanges, not meant to be lucrative "fillers" for bc education or fundraising, again.....imho.

BarredOwl

Hi:

I do not like the (new) positioning of the "outbrain" links. As noted above, they are wholly inappropriate in some cases. Practically speaking, they decrease the speed and efficiency at which I can navigate the boards (extra scrolling to by-pass them; poor user experience). In addition, the "outbrain" links are positioned so close to the page navigation buttons on my tablet screen, that I have inadvertently activated one against my will. If there is any "profiling" going on, I have now been profiled by some "bot" or other, and since it was unintentional, I have been incorrectly profiled.

I am not interested in the proffered content either (which is often off-point as noted by others). I know the main site is there, and I use it and its search field when I need it. I often provide links to relevant content on the main site in my replies. I'd link to the main site more often, but I find many informational pages too top-line.

There has always been a link to the "Main Site" at upper right, in white text, but it is not very prominent and is probably missed by many new users, who found the discussion board pages first. That could easily be fixed by modifying the main menu at left to include a menu item for "Main Information Site", thereby increasing traffic on the main site (see below).

Beesie makes an excellent point about the "Announcements" taking up essentially all of the screen on the All Topics page. I don't think Announcements belong in "All Topics" (irrelevant content). Those who know the topics list can be found below will scroll down immediately, ignoring the Announcements and becoming habituated to ignore them, such that in practice, the prominent placement works to achieve the opposite of the desired outcome. (This is also true for the prominent placement of "outbrain" links.) New users may incorrectly assume that is the full content of the page, not realize they have to scroll down ad infinitum to find the elusive topics list, and navigate away before they find it (poor web page design). Besides, many members probably bookmark and live in the "Active Topics" area, never navigate to the "All Topics" page, and would never see the "Announcements". I recommend the "Announcements" be removed from the All Topics page entirely, creating a separate page for them, and including a separate menu item for "Announcements" in the menu at left so they can be found easily.

I believe that links to "more from our site" have been present on some pages for a long time, but they were located at the bottom of the page (which is where they belong if used). The commercial advertising (e.g., currently for Ibrance and Neulasta) is located at the sides of the content in the main site, and not on the message boards (good call!). The recent re-location of the outbrain links seems to be motivated by a desire to increase traffic on the main site information pages where the ads are located for revenue-generating purposes for BC.org.

It does not appear to be true that all other non-profit sites engage in such practices. As of this date, the American Cancer Society information pages appear to be largely devoid of advertising content, other than the occasional pop-up request for donations:

http://www.cancer.org/cancer/breastcancer/index

ASCO information pages do not appear to contain ads either, but do have discreet, well-positioned acknowledgments of sponsorship and pop-ups requesting donations:

http://www.cancer.net

Of course, as much larger organizations with broader missions, ACS and ASCO receive substantial industry support and have large fund-raising arms (and associated overhead), so these observations are not dispositive of BC.org's potential need to "monetize" its site. Yet, up to now, BC.org has managed to maintain the Discussion Boards without intrusive placement of the links. Has the financial condition of the organization changed, necessitating changes? Has the organization made a business decision/value judgment that the Discussion Boards need to generate more revenue to be either self-supporting and/or to subsidize other activities of BC.org? Are there other alternatives or less intrusive ways to accomplish goals? We shall see. It is also possible that the potential impact of these changes on users was not fully thought out and was not necessary. The organization may need some time to review the matter internally.

As for the ads themselves, they are commercial in intent and focus. I do not object to the existence of the ads or their current locations (although there are relevancy issues, e.g., in the DCIS section). Overall, the main beneficiary of advertising content is the bio/pharma industry. I am not anti-pharma, but I agree with others that it is not unreasonable for members here, many in what is the most vulnerable time of their lives, to feel that being re-directed or pushed toward advertising content is distasteful. If in the process, members are also profiled and their information exploited for commercial purposes by Outbrain or its clients, that could easily be perceived as distasteful, creepy, and/or unacceptable -- even as something akin to "pink" (and blue) exploitation.

If I don't like it, I cannot go elsewhere. I have found no equivalent to these Discussion Boards anywhere, in terms of the concentration, scope or diversity of personal and practical experience, wisdom, and kindness. For example, there are no Australian gentlemen in the local support groups around here. I see the Boards as one of the centerpieces of BC.org and its mission, and the Boards are the main reason I support this organization.

BarredOwl

Jackbirdie

BarredOwl- as always, your research is substantial, your logic is elegant, and your writing is comprehensible, helping to make sense of the broad and complicated financial, technical, and ethical issues here.

Thank you for taking the time to do that

Blessings2011

Nihahi - SO well said!!!

Traveltext

It took me a while to understand where the ads were because I don't see them since they aren't being delivered outside the US. Are outside ads being delivered in the discussion section too or are they just BCO ads that take users to a main site pages with ads? If there are external ads on the Discussion boards, I agree they should go because they will never be targeted properly due to the random and often sensitive nature of the conversations.

Nobody has suggested an alternative way to help fund the site. I personally would pay an annual subscription because, as everyone says, there's nothing better around and there's such a treasure trove of information packed in the archived pages. It looks like BCO has some thinking to do.

Anonymous

Moderators we are waiting to hear back from you. Why is this being ignored by you? It's not the only thing we are waiting to hear about and I hope ceanna doesn't mind but I'm might as well mention this too, since it's basically the same gripe about being ignored.

You said regarding point 3/ (on that angels thread ):

"3. We're going to figure out a way to allow members to express their wishes in a topic in this forum.

We will keep you posted. "

That was back round the beginning of this month. The OP questioned the above wording as doing a 180degr turn on what you said before. I've looked around the forum and can't find any updates or announcements about this.

Many boards have announcement/posting areas where members can about post about site issues and get Moderator responses. You need to respond to your members not leave them wondering if you're ever going to answer.

BarredOwl

Hi Traveltext:

I am seeing the external ads for Ibrance and Neulasta on the main site pages only, not on the Discussion Boards pages.

As I noted above, up to now, BC.org has managed to maintain the Discussion Boards without intrusive placement of the "outbrain" links. Thus, it is not clear to me that any additional funding is even required.

If there is some need to increase traffic on the main site pages, where the ads are located, I made the suggestion to include the main site as an option in the menu at upper left. Improving the content and coverage of those pages could also increase activity and linking to those pages.

By the way, I am totally opposed to a user or registration fee, which may create access problems for those already struggling with the added costs and financial burdens of treatment.

As for the lack of response, I suspect the Moderators aren't driving the bus on this matter. That wouldn't stop them from communicating that internal review among various functions is on-going (if it is).

BarredOwl

Traveltext

Thanks BarredOwl. So, no external ads on the discussion boards is good. Would you like to see the BCO ads go from this section? I agree the two sections of the site could be more intuitively linked, since there's new information posted all the time.

Yes, the poor old mods aren't making these decisions. No doubt they are waiting to hear from above!

Beesie

Great summary of the issues, BarredOwl.

As much as I am trying to avoid these ads/links, they do sometimes catch my attention. This morning, I saw the icon and link to "Breast Cancer Myths vs. Facts". About 9 months ago I posted to voice concerns about the similarly named section on the new breasthealth.org website (that's also run by BC.org). So I was curious to see what information was provided in the section here on BC.org. I took a big leap of faith, and clicked on the icon.

WHOA.

90% of breast cancers are largely due to lifestyle and environmental factors. Seriously? This is exactly the same information I raised concerns about 9 months ago. Where is the data to support this?

Here's the data that I've found:

• First of all, the 5% to 10% figure is misstated. This is a common mistake, found on many websites, but I expected BC.org to be more careful and more accurate. Here's what the National Cancer Institute says:

"Together, BRCA1 and BRCA2 mutations account for about 20 to 25 percent of hereditary breast cancers and about 5 to 10 percent of all breast cancers."

Doing the math, on the low end this means that if BRCA mutations represent 5% of breast cancers and 25% of hereditary cancers, the percent of breast cancer that is hereditary is 20%. On the high end, if BRCA mutations represent 10% of breast cancers and 20% of hereditary cancers, the percent of breast cancer that is hereditary is 50%.

So it's not 5% - 10% of breast cancers that are hereditary; it's 20% - 50%. Yes, the 50% is probably too high, but when you consider all the 'breast cancer' genes we now know about (in addition to the BRCA genes), all the 'breast cancer' genes that we don't yet know about (no BC genetic expert or counselor doubts that there are more), plus other hereditary factors (breast density, age of menarche, etc.), it would be hard for anyone to think that only 5% - 10% of breast cancers are hereditary.

• Looking at this from the other side, what percent of breast cancers are preventable? i.e. What percent are possibly caused by lifestyle and environmental factors? According to The American Institute for Cancer Research, approx. 33% of breast cancer cases may be preventable. Estimated Cases of US Cancers Preventable per Year by Diet, Activity, and Weight Management And according Cancer Research UK, 27% of breast cancer cases may be preventable. Preventable Cancer Cases By Cancer Type

33% or 27% are a long way from the 90% mentioned here on BC.org.

Simply looking at a list of known breast cancer risk factors makes it abundantly clear that there is no way that 90% of breast cancers are preventable or are caused by lifestyle and environmental factors. Breast Cancer Risk Factors Table This table used to rank the risk factors by severity of risk - and there was not a single lifestyle or environmental factor that was considered "high risk" or even "moderate risk". Those categories were filled by the risk factors we can't control. All the lifestyle and environmental factors were considered to be "low risk". That's not to say that we shouldn't do what we can to address those factors we can control and reduce our risk - of course we should - but it seems to me that the message that BC.org is trying to convey goes well beyond this. To me, the implication of the Breast Cancer Myths vs. Facts presentation is that 90% of breast cancer cases can be prevented if only women would do the right thing.

There have been so many threads on this board written to decry the "blame the victim" mentality that we often see when we are diagnosed with breast cancer. Most of us could not have prevented our diagnoses and it is very disturbing that people don't always understand this. Why is BC.org fueling this mentality?

Sorry for taking this thread off track. As annoyed as I am with the presence of these ads and links, I am astonished by the fact that this is the type of information that's found behind one of these links.

Anonymous

Those who are proficient in reading about financial matters might like to go to:

Main site> About us> Financial information> 2014 audit pdf

This gives you a breakdown of ingoing-outgoing costs.

If in the process, members are also profiled and their information
exploited for commercial purposes by Outbrain or its clients, that could
easily be perceived as distasteful, creepy, and/or unacceptable -- even as something akin to "pink" (and blue) exploitation.

Yes and especially agree with the whole pink/blue idiocy namely I DON'T like being told to "think pink".

ceanna

I appreciate everyone's comments and what I am learning here. Now if we could just get BCO to answer our many questions and give an accounting of what really goes on underneath our computer clicks in our use of this community.

Musical, you bring up another area that deserves an accounting. From my cursory look at the 2014 financials, it appears the expenses for this online community amount to about 5% of the BCO budget while the " website monetized revenue" generates about 14% of the BCO income. Corporation and Foundation grants along with In-kind contributions make up the majority of income. In expenses what is called "Core" makes up almost 60% of expenses but in that report "core" is not defined and there is no explanation of In-Kind contributions. Only BCO can give us a full explanation.

Charity Navigator gives BCO a 94% four-star rating which is very good.

fifthyear

Charity Navigator "rate charities by evaluating two broad areas of performance; their Financial Health and their Accountability & Transparency". They are not bullet proof rating, but so far, BCO got good rating due to the sheer number of cancer patients on the site, the shared experience is GOLD in advertising, and the BCO now cashing in, at least that is how it looks to us mortals.

They do have expenses to pay, for example, the CEO, Wohl Hope, collects $225,735 a year, while Dr Marisa Weiss got $231,989 yearly. Not as obnoxious and in your face as the Komen people but pretty cool cash.

No one complaint about people getting paid, just respect the community privacy and our journey as cancer patients.

BarredOwl

Hi traveltext:

Re your question, at a minimum, I would like the intrusive outbrain links on the Discussion Board pages moved back to where they were before, which I believe was at the bottom of the page. I also hope people will receive some answers to the questions above about whether information is being collected and how it is used. Then one can at least make an informed choice to click or not click

Musical, ceanna and fifthyear:

Thanks for the info. Nice work if you can get it, as they say!

BarredOwl

Meow13

You mean I'm in a minority 10% that was doing all the right things healthwise? I don't buy it.

Anonymous

I am seeing Facebook and Twitter icons/links/buttons in certain areas here and I'm doing more research on these as we speak. This is in light of Facebook now openly stating what they denied before, that they're stepping up their tracking game. As such I am all the more wary. This news is just a few days old. . Grrrr.

Kathy044

Traveltext I don't seem to be getting the ads that Barred Owl mentions either. I'm in Canada. Just thought I'd mention that you are not alone.

I too do not appreciate the location of the new buttons between OT and replies and had ignored them but with the talk of ads just had to try. BTW the Q&A about using Instant Breakfast in a pancake recipe for the vitamins during chemo recovery was dated the year 2000.

Kathy

Traveltext

Marisa C. Weiss, M.D. is the founder, president, and guiding force behind Breastcancer.org, the world's most utilized resource for medical and personal expert information on breast health and breast cancer — reaching 70 million people globally over the past 15 years. Read more HERE.

And some good patient advocate advice can be found here:

https://www.mybreastcancercoach.org/en-US/Be-Your-...

Anonymous

fifthyear, thanks for your insight. With those figures it feels all the more like BCO is run more like a business than a charity. I know there's overheads and things to be paid for, which I have no problem with, but it seems to me a lot can be obfuscated in huge multi million $ amounts. I totally agree about our privacy being respected.


"Then one can at least make an informed choice to click or not click"

@ BarredOwl, Sadly this is not the case with such as the FB like button. Now you don't even have to be logged in to FB or even be a member, or worse, even click on the icon on a 3rd Party site for it to track you. All you have to do is navigate to a page.

traveltext I fail to see how your promotion of BCO is relevant to a thread dealing with how BCO might allow us to be tracked to promote itself.

Traveltext

Musical, my support for BCO is very relevant to this topic because I don't believe we are giving the founders enough credit for the work they have put in to building the world's best site on breast cancer. Perhaps even lay off criticising me, and wait until we have more information on what exactly is happening with the site. Or consider me a voice for those people who, despite some reservations, are very happy here because I have received so much from the site. Furthermore, I fully understand that BCO stores data on what I do here and even if I were seeing ads, I'd likely ignore them as I do when I'm on other sites with ads

Anonymous

My observations are not personally motivated traveltext as you seem to indicate. This is nothing at all to do with a generic "not giving enough credit to founders" and such. That's just red herring stuff. Ceanna and many others have expressed a legitimate concern which I agree with. As far as your stance on ads, tracking and privacy, which you've stated multiple times now, I'm simply calling it as I see it. I don't agree with you. Nothing personal. I realize you've helped by looking around the site in regards to the ads for which I'm grateful. Past that, I stand by what I said.

ruthbru

Not wanting to debate, but will chime in to say that I don't mind the ads. I take them for granted as part of Internet Life. I don't go on the main page very much anymore, so every once and awhile I do click on something just to check it out, otherwise I ignore them. Since I am a guest of BCO, I am willing to play by their rules because the good it does in my life outweighs any annoyances (even if I won't agree with all of their decisions....'cause I don't). If someone wants to know my preferences, I don't care. If I did, I would stay off social media all together. Just my two cents......