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  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    so what is phase one? What is being thought of about phase one. Every mod response to someone is the same thing. I too think with all these ads that i dont remember seeing when i was a lurker 3 years ago that this is going in a direction we won't like. Who are the user testers? Are they really bco members?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2018

    HIGHLIGHTING as compared to MINING POSTS

    Highlighting a golden post means finding the golden post first - thus mining could be a word of choice.

    ADVERTISING QUESTION

    Advertising is inconclusive information that pushes individual treatments. Advertising is not viable information for users of BCO. Advertising actually misleads breast cancer patients as to the total sum of what the treatment will entail, what they will experience and the survival statistics if they choose one or the other or none at all.

    In what way does BCO, a non-profit, gain from using the advertising?

    WHAT NEEDS CHANGED

    Very little. So no worries here.

    SUMMARY

    There has been a lot said. My summary is this site works. Leave it be.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    We, the users, are Breastcancer.org. We provide the daily updates, the support, the energy, the time to care for others going through breast cancer. I think there are way too many forums, which can get people lost. Threads are kept in the forums that they should be in, but Stages could be Stage I, II, and III, with a separate Stage IV. I too think that MBC plastered over the pages of this site, scares alot of women, and some are very young. Personally, I think showing that women live active lives, even during diagnosis, surgery and treatment, is a far better message than showing the most vulerable. This site probably has scared away women who could contribute, but the imagery is just too much. There is more than one face of breast cancer, and we are strong, resourceful, independent, and fierce. We are not "Brave" "Couragous" "Fought the Good Fight" like the slogans like to brand us. We are street fighters, boxers, and MMA. We do not need a website that controls us, but empowers us.

    I do think there are forums that require more than a general password, to keep out nosy curiosity seeking individuals. I also think that a person should be a member for several months, before they can access the entire site. Users should earn points for their posts, and be granted their own blogs and moderator positions, where possible. I don't think our messages between each other should be monitored. Messages should be private.

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    We are reading and listening, we promise.


  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited January 2018

    Perhaps I should not chime in here not having read the proposed changes but I am a privacy freak due to recent events. In hindsight I shared way more than I should have on such a public site, but early on I was naïve, venerable and scared and never fully realized the ramifications. Going forward I am far more careful of what I divulge and share, but what totally unnerved me was when I made a random Google search and one of my posts popped up on the world wide web for all eyes to see.

    Our member's posts go back many years and are never purged. What purpose does an old treatment plans serve with this ever changing science of BC. Doesn't that just lead to confusion and misinformation being disseminated? In that regard I find the "Search" a disservice.

    I will also add that I now censor my post knowing that anything I post will be hanging here for all eternity and all can view (members or not). I am becoming a lurker at best and not a contributor. I have wondered if those beautiful women that were so hopeful, warriors and bound and determined to win their fight and died, are their posts at least deleted or can the world peer into their lives like a soap opera or a train wreck? I never had the balls to check.

    My thoughts... this is a great site if you want to stay current on the latest science yet know enough to stay away from the "search" and rather make a new forum. As to sharing anything from the heart, anything personal,....know that you are exposed forever.

    My thoughts, going with the myth that after 5 years we are "cured" can BCO do the same and purge our old outdated posts after 5 years? They serve no logical purpose except to make the site look good with numbers but at our expense.

  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    just asking to understand not broken, unless you reveal your name, how are you being exposed for all to see? Only you know who you are?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    UPDATE: I googled my Breastcancer.org name, Michelle_in_Cornland, and found that it had been appropriated. The following is the result of my search. It seems that some of the things that I wrote on here, became tag lines for porn. You be the judge.... should my alternative name be Michelle_in_Pornland??? Even more reason to make our posts private.

    Breast Cancer Forum: Hormonal Therapy - Before, During and After

    https://community.breastcancer.org/forum/78

    Skin Deep - Youthful skin and nails while on Tamox and AI's. 16 Posts 247 Views. Created by:Michelle_in_cornland on Jan 20, 2018 05:55PM. Latest post: 2 hours ago by Michelle_in_cornland ...

    Breast Cancer Forum: Emotional Crises: Anxiety, Depression & Other ...

    https://community.breastcancer.org/forum/102

    Mammoversaries // Cancerversaries. 37 Posts 536 Views. Created by: Michelle_in_cornland on Jul 30, 2017 01:30AM. Latest post: Jan 24, 2018 01:50PM by Oceanbum ...

    Breast Cancer Forum: Hormonal Therapy - Before, During and After ...

    https://community-heroku.breastcancer.org/forum/78Uplifting and Lively Messages. No holds barred.. 824 Posts 9,272 Views. Created by:Michelle_in_cornland on Dec 12, 2016 01:06AM. Latest post: 3 hours ago by Claire_in_Seattle ...

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    awesomepitcher.ga/mietrajil/femara-days-610124.phpMichelle_in_cornland. Hyaluronidase Glycoproteins. The COC states that low dose rate brachytherapy is usually given over several days as an. T have a chance these days in this economic climate, he says. Prolatis drive ingredients. M afraid independent traders on the high street don. Five animals developed a red vaginal ...

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    https://thetraderr.ga/forum/78/topics/859659katie holmes nude photos thick puerto rican pussy 20 hours ago free 69 sex videosMichelle_in_cornland wrote: party in the nude How old are you? Your doctor will probably not prescribe birth control for you ever again, since you were hormonally positive. Will you be taking an anti hormonal - Tamoxifen, etc.? As for the ...

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    https://thetraderr.ga/forum/6/topics/852739nude mature women photos naked black body builders Feb 21, 2017 11:30AM black teen gangbang tubeMichelle_in_cornland wrote: pam anderson sex pics She may need space and time to heal, both physically and mentally. That process is something that you cannot help with, it is instinctual and internal. Since you ...

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    michael jackson had sex best porn free movie Aug 30, 2017 08:32AM hip hop porn clipsMichelle_in_cornland wrote: free xxx sex vid Trish, we completely understand. Just having the diagnosis said to you is irreversible. We all feel something around the time of year, days of mammogram, days of diagnosis, day of surgery, ...

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    Nov 13, 2017 - the pussy cat dolls miss california poses nude Nov 13, 2017 06:41PM pix of naked girlsMichelle_in_cornland wrote: mass effect 2 sex Your nodes look good, and that is something to hang onto right now. The rest they won't know until biopsy and surgery. We have all been in your shoes and will be here for ...

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    mark's bookmark free porn brother sister porn movies Oct 25, 2017 05:47AM eliza dushku sex picsMichelle_in_cornland wrote: top tranny porn stars How old are you? Your doctor will probably not prescribe birth control for you ever again, since you were hormonally positive. Will you be taking an anti hormonal - Tamoxifen, ...

    Patient talks about Psychologist and Frequent Urination | Treato

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    Michelle_in_cornland I'll probably just wait until I go back to the states (in early March) to see a psychologists. ...It will be next to impossible here without traveling for 2 hours (public..." Comment Helpful? Save ...

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    NotBroken, you are absolutely correct. I have googled some catch phrases in my postings, and they have come up for all to see. But, I knew that when posting. I am hoping that someone, one day, who needs "see" to the days of the life of Tamoxifen patient, can read my thread. I have had several people write to me and let me know that my Uplifting and Lively Messages in the Hormonal Forum, gave them hope of living a full life while taking the medication. After five years of posting, I might feel different. But you made some excellent points.

    Thank you Moderators, for letting us know that someone is reading our posts in this thread!!

  • Sara536
    Sara536 Member Posts: 7,032
    edited January 2018

    If Ibrance is paying for 4 advertisements per page for BCO pages that are not meant for people eligible for that medication, they probably see it a way to "soften us up" as future customers. (They are not stupid.) If you keep your eyes open, you will probably notice their reps in your doctor's office waiting room with their shiny shoes and attache cases full of samples. You may also see them swoop in at lunch time (with insulated bags of hot gormet food) to give the doctors a sales pitch disguised as "professional development" for which they will then issue free "continuing education units."

    I'm sure some of the brass at BCO know exactly what I'm talking about.

    If this kind of saturation advertising is allowed on BCO, how can we comfortably trust the information that BCO provides?

  • ceanna
    ceanna Member Posts: 5,270
    edited January 2018

    Michelle, I am so sorry that is happening to you and your posts. I don't think I want to try to google myself!!! That is partly why these unknown changes in the BCO website are such a huge concern. BCO tells us they want to incorporate their medical content with our threads which appears to me that we will experience more invasion of our privacy, targeting, and tracking, perhaps not only on this site, but from the predators on the Internet. We need to work with BCO to improve privacy not enhance the web's ability to use us. Now this is frightening!!!

    BCO, it's full disclosure time!!

  • Iwrite
    Iwrite Member Posts: 870
    edited January 2018

    The community threads have been the most valuable feature to me. This is likely the same reason others balance enthusiasm site. I do understand the need to cover expenses and perhaps have added revenue, but I would rather not see more drug ads.

  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    Michelle_in_cornland, yes, this is to be expected. The internet is an open world, and hence the reason we stress using names that are not your own.

  • Artista964
    Artista964 Member Posts: 530
    edited January 2018

    I think photos of yourself is worse. A name alone probably wont be recognized but why have your photo if youre concerned about privacy?

  • thecargirl
    thecargirl Member Posts: 94
    edited January 2018

    I think the site works perfect and it very important to so many of us. Why do you feel the need to change anything? I don't want to be tracked! You will be doing a big disservice to turn this website into a complicated forum that is not needed,

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    This site and its contents should be protected from the reaches of internet predators. I disagree that we need to be an open target for those to prey upon. We have some of the most vulnerable people on this website, and there should be no question of protecting all parties involved.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2018


    All websites and their users are more or less prey for internet predators, and for the owners of those sites with forums, it's a constant battle to keep out spammy posters and others looking to hack the code. And all website owners have access to very keystroke placed on their sites. Of course, search engines like Google know everything you do on the internet, including what you post and where you post it, as well as your search history. They will also publicly index forum content based on appropriate search terms. Community members here need to balance their privacy concerns with their desire to give or receive help, and to socialise, support friends, and share information.

    Concerning ads on the site, the only ads I see are BCO ads. Obviously, while Outbrain has been contracted to monetise the site in the US, they are not showing them in all other countries. Outbrain would be using the keystrokes of people here to determine what they are interested in and therefore what ads would be displayed to them. As to the appropriateness of the ads, it's up to BCO to give Outbrain some guidance as to which ads should appear where.

    I do remember the Outbrain fuss on BCO a couple of years ago, and I believe ads were subsequently removed from the forums due to continued protests and due to the disparate nature of posts as far as determining suitable advertising content went.

    Perhaps management could outline here their plans for advertising on the new site.


  • NotBrokenJustBent
    NotBrokenJustBent Member Posts: 394
    edited January 2018

    Seriously, what is the relevancy of posts from 2007? Would you use that information when deciding your treatment plan? It just seems to me that at some point old posts should be purged.

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2018

    I think old posts should be locked, but not purged.

    Older posts provide an important history, both for individual diagnoses and treatment plans, in cases where someone returns after a number of years, and to show the advancement of treatments and how protocols have changed. I dig into old posts all the time to find information.

    And some of the information is still relevant, particularly those threads that refer to dealing with issues related to breast cancer, rather than being specifically about treatments.

    For those of us who have lost friends from this board, deleting their conversations and wiping them away, would be painful. That said, if there is a way to remove old posts from public Google searches, that would be good.

    Edited to add:

    Here's how to do it. Create an Archive and put all posts older than X years into the Archive. Do not make the Archive available to Google searches. Within the discussion board Search function, don't include Archive posts within the current "Search" but create a separate "Search Archive" function so that newbies won't accidently re-activate old posts, but those of us specifically looking for old posts will be able to find them.

  • marijen
    marijen Member Posts: 3,731
    edited January 2018

    That's what the “are you a robot" captas are for, so search engines can't capture the posts. I don't think BCO wants to protect privacy because it would limit the viewers. The viewers would have to be signed in to see the conversations.

    Edited to add link for more information on captchas

    http://captcha.net/


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,689
    edited January 2018

    I think that viewers should have to be "signed in" to view any content on here. It should not be a free for all, with all of our posts.

  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2018


    Marijen, antirobot capchas don't stop search engines seeing the posts, they just verify that the site viewer is a human.


  • marijen
    marijen Member Posts: 3,731
    edited January 2018

    Traveltext, then what does stop search engines? Anything?


  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2018


    Marijen. Site owners can exclude content from search engines by using the robots.txt file or Meta Robots tag. They do this cautiously, since they mostly don't want search engines to exclude their pages.

    Google may not retroactively remove pages from results if the robots.txt file method is implemented. While this tells bots not to crawl a page, search engines will still index site content if there are inbound links from other websites.


  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited January 2018

    To step away from the privacy issue (interesting and important as they are), I'd like to respond to this goal:

    "3. Integrate the medically-reviewed and community-generated content into one cohesive experience
    We want to encourage more of the visitors to our site to register to join our community so they benefit from both medical and patient expert points of view. Likewise, we want more of our community members to have access to our expert content."

    1) Visitors can already benefit from both the medical and "patient experts" point of view. There is nothing at this time dictating otherwise. Changes to the site may LEAD more people to do so, of course. I am concerned however that not infrequently there are outright erroneous statements made by community members, statements that may contradict what's seen in the main pages. I sort of cringe at the idea of actually leading neophytes to some of these statements.

    Yet some of our members provide deeply informed and considered insights and analysis, often much better than the information on the same topic that might be found (if at all) on the main site. How are neophytes to distinguish between what's reliable and what's not? Intermingling posts and the main site to create "one cohesive experience" may lead to certain amount of confusion. Doing so could, conceivably, also create some liability for BCO.

    At the same time, much of the stock content on the main site is, in my opinion, pretty simplistic and much of it does not reflect the latest information. Some of the Ask the Expert posts are, as I recall, over a decade old and are pretty stale. I really see the need for both more advanced information AND updating on the main site.

    2) Members DO currently have access to the expert content. It's not an either or situation. Again, I think much of that content could be stronger. Offering an option for advanced info on a topic might be helpful.


  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited January 2018

    People who do not facebook (like me too) have no access.

  • runor
    runor Member Posts: 1,798
    edited January 2018

    Our private messages are not private? Then why in god's name are they misleadingly called private messages? That's insane. They should be called, 'we can open your mail and read it even though we would go to jail for that in the real world', messages.

    As for old posts being nuked into oblivion. Hmm. I vote no. Here's why. Google searches brought up old posts that time and again brought me here. And back here. And oh look, here I am on BC.ORG yet again. A trail of crumbs kept leading me back to this site until I checked it out in its entirety and was BLOWN AWAY by the vast collection of breast cancer voices. I feel there is HUGE value in old posts. If you are of a mind to do your own research and gather your own statistics and form opinions based on what you read in people's bios, how many posts they made, what their last posts were about ... you can get a feel for subjects that might concern you. I think deleting old content is erasing the voices that may yet have something to give. It also skews information by removing outcomes based on older treatments. We need to know where we're going but we al so need to know where we've been. Rewriting history by editing it is for dictators and lunatics.

    I agree with those who said that switching up the look of a forum can turn people off in droves. I have seen it happen countless times. Make it miserable and you won't have to delete content, you'll be machine gunning your own members.

    Melissa Moderator, I got the feeling when reading your last post that this is a done deal. That no matter who says what, no matter how PLAINLY AND CLEARLY you are being 'zoomed' here, you have no intention on responding to any of this. I would also like to know numbers. You say you these changes are in response to members asking for changes. How many members out of the total? Were these long term members or people who flew in and flew out with 3 or 4 posts? Were they actual breast cancer patients or planted posts by vested interests? Are these requests for changes and upgrades public? Were they posts that someone made, in a thread, on the site? Or were they private messages asking for forum upgrades? If they were posted in threads, can you please provide links to the threads? If they were private messages, can you please make them public, since private messages are, apparently, not actually private.

  • Beesie
    Beesie Member Posts: 12,240
    edited January 2018

    runor, good set of questions about how the proposed changes came to be. I'd like the answers too.

    By the way, the issue of private messages came up a few years ago. We were reassured at the time that private messages are private. Of course, as on any website, site Administrators can access PMs if necessary, but that should be a rare exception - as an example, a situation where someone is being threatened. If I recall, I did ask what rules and approval requirements were in place to control Admin and BCO personal access to PMs, and never did get an answer on that. More answers I'd like to hear.

    Hopeful, 1) yes! and 2) yes!. Here again, some of the same concerns that I have voiced in the past, with no response received.


  • Moderators
    Moderators Member Posts: 25,912
    edited January 2018

    Phase I is identifying what design and features will be helpful to fulfilling our mission of helping people make sense of the complex medical and personal information about breast health and breast cancer, so they can make the best decisions for their lives.

    This is where we are, and where we will be for some time. We are far from a "done deal".

    Over the years, so many visitors/members have provided suggestions and feedback (in the threads, in PMs, in surveys), which we have collected. Member suggestions range from design, to features (e.g., please add "x" feature), privacy suggestions, profile additions (e.g., please add x treatment), and so on. We are grateful to be able to have this dialogue.

    As user-testing thus far has shown, many people who use the community are unaware that we have medically/expert-vetted content that is continually updated and added to. User testing has also shown that people who first enter our site through the content often don't realize that we have a vibrant, supportive community. We would like our visitors to readily know what we at Breastcancer.org can provide to best support decisions and well-being. And we hope to make it easier for people to find the content and the conversations that best suit their unique and changing needs.

    In addition to our dialogue here, we have offered two Zoom meetings with our CEO, where we have encouraged conversation. We will be hosting more, and hope to have greater attendance, where we can discuss your wants and concerns. As for the nature of the internet, our boards, and privacy, we ask people upon registration, to review our Community Guidelines, with links to the Terms of Use and a Privacy Statement. We also have this in our Welcome Category on the boards:: Start here: We're here for you. We are happy to make changes to better help visitors understand these issues, if you have suggestions.

    We sincerely appreciate your feedback.

  • BarredOwl
    BarredOwl Member Posts: 2,433
    edited January 2018

    Moderators:

    On Jan 25, 2018 12:52PM BarredOwl wrote:

    "Like five (5) people were on that call based on the screen information? Two people from BC.org and a few members (including me)? Whether due to lack of awareness of the call, the last minute change in access info, an inconvenient date/time (Wednesday, January 17th @ 12 noon ET), an assumption that the call would be recorded [it was not] and/or lack of interest is unclear. . . ."

    --In response, some members noted that the time or modality was not convenient or feasible.

    --Some members said they did not see the information in the Announcement section. Please note that many members navigate directly to the "Active Topics" page or to their favorite threads and rarely if ever visit the "All Topics" page.

    --This single thread is not sufficiently prominent and it's title doesn't really alert one to the possibility that it may announce a specific event.

    Later in this thread, you noted: "Our two zoom meetings had a sum total of 6 participants." Then, in your most recent post: "We will be hosting more, and hope to have greater attendance, where we can discuss your wants and concerns".

    I think that the organization shares some responsibility for the poor turnout in the last call (e.g., last minute change in call-in info announced on a single thread with an inapt title). "Hoping" for better attendance is not likely to come to pass without some change in how the organization schedules and/or publicizes zoom calls. Any call should be included in the Announcements section with a link to a single thread where last minute updates (if any) to call-in information will be posted. Each call should be announced in this thread, with repeat advance reminders. Please also create multiple call-specific threads with an informative title for each upcoming call (like you do for your multiple posts about In the News features and Podcasts). Periodic reminders in the days ahead should be provided, along with reminders to mark calendars.

    BarredOwl

  • Traveltext
    Traveltext Member Posts: 2,089
    edited January 2018

    Agree with BarredOwl on this. Plus, it's not an efficient or organised way to get feedback. Why run a video conference, which even with a big boost in publicity will only attract tens of people rather than thousands. You can easily survey all 192,000 of us with a survey form that asks direct questions and solicits suggestions. I'm guessing you are going shock, horror at the thought of process all those replies, but modern survey apps do all the collation for you. And, since a 10 percent response is considered good, the job would be manageable. The most commonly used survey app is SurveyMonkey.


  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited January 2018

    It is my opinion that any complaints & suggestions & feedback & answers to surveys should be graded. Those members who have only dabbled in the boards a few times do not have the same understanding of the issues that people who have stayed around to join the community and pay forward - like Barred Owl & Bessie & ceanna & TravelText & SAS & Special K & Jazzy & Whippetmom to name a few. Sounds like all your feedback is raw data and you don't rate the suggestions or answers by participation or longevity. Feedback from 'New' members over the years may be from people who posted only through their own crisis and then disappeared. Or people looking for Facebook. I think you need to take all the suggestions into consideration but also consider where they come from.

    I do agree that a couple of zoom calls are inadequate. Many of us are not computer savy and would not feel comfortable joining that venue. But as Traveltext points out, we would likely answer a survery.

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