Provide feedback/advice about our site and campaigns?!
Comments
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I can see locking/archiving threads that have had no posts for some number of years, but I absolutely wouldn't want to see them removed. I read old threads quite a lot when I'm searching for something.
If threads were to be deleted, I'd want an easy, clear way to download my own posts for my future reference.
Some message boards have public and members-only forums, which seems to work well.
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BarredOwl, you are correct, people do tend to navigate to active topics, and because of this, a desired feature in a re-design would be to add a better means of communicating announcements. We haven't heard from anyone that they tried unsuccessfully to get in, but we apologize if that was the case with the abrupt number change. The first Zoom meeting had a similar number of attendees (4), so a low attendance.
The Zoom meetings are a unique opportunity we are providing for community members to meet and share thoughts with our CEO, Hope Wohl. We will play around with different times/days, to try and accommodate different schedules/time zones, and will broadcast these session to the best of our ability. These session are not intended to take the place of user testing, surveying, or what is discussed within the threads.
We ran about 30 face-to-face user-testing sessions with community members in fall 2017, to find out how they use our site, what issues they have and what features they would like to see added to the site. The insights gained from these in-person testing sessions was very valuable. We will do much more of this later when we start testing specific concept and features, also using zoom as a remote face-to-face user-testing option.
Traveltext, we agree, surveying is an essential tool to reach the "masses", and Survey Monkey specifically a great product, and one we use frequently. We ran over 10 surveys in 2017 (with Survey Monkey), in both the English and Spanish community, and within certain topic areas, receiving thousands of combined opinions. We are planning on launching many more surveys in 2018. The responses we receive are invaluable!
We appreciate all the thoughtful feedback, and will to communicate our goals as we move along. As we said, we are in Phase 1, and are slowly identifying what we hear to be most important to help further 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.
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Wow, why are you so wedded to Zoom? Four people in attendance at each “meeting" and the CEO was one of them each time. Hmm, and membership runs over 100,000. This unique opportunity isn't cutting it but you want to waste more time with further meetings? What am I missing? Have you contracted four a certain number and for some reason can't break the contract? If you want to get the ball rolling, just do the survey!
If you want people to take notice of your announcements, give to a cleaner look. It's even busier to the eye than the information pages which I found very distracting when I came here after my diagnosis.
I hope you are using testers from a wide range of computer skills to get a good feel for how easy BCO is to maneuver through. Searching web pages isn't intuitive to everyone.
I'm getting tired of the weak excuses and want to leave this thread but it's like watching a wreck about to happen and you can't take your eyes off of it.
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Ms. Wohl and moderators. You've seen the feedback and comments you're getting on this thread. I just can't figure out why you're not providing us the information we are asking for and why the BCO response statement has been made several times that this is only Phase I and the early stages of planning. If you were writing a grant for your $2.5 million dollar funding request, you would have to have specifics planned out to describe what you need $2.5 million for. Certainly your planning has already gone far beyond "early stages" to be able to estimate costs. At least it should have.
Please answer our questions and address our concerns.
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i brought up the survey. Makes the best sense. You ask us what you are looking at and we answer. The online thing makes us think of questions and not knowing details of whats on the table really isn't productive. So put out a phase 1 survey for all. That way too no one can say they didnt have a chance...assuming its in many places.
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ceanna, and All. Thank you for your concerns and your feedback. The zoom meetings were an avenue to have a face-to-face conversation. If there is little to no interest, we can certainly reconsider doing these. We ran a very large survey last year asking you about how you use and feel about our site. Hundreds completed the survey. This information was very instrumental!
Breastcancer.org is a non-profit organization, trying to continue to provide a valuable, free and improved service to thousands from around the world. We do not currently have additional details to share, but will do so things evolve.
Best, Melissa
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I agree with everything Minus Two said! Take note of how invested the members are that you decide to use as your steering committee! The people who have stayed here and built this site DO have a bigger stake and should have a bigger voice in what goes on.
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post count doesn't necessarily reflect investment. I lurked long before i signed up. Good ideas should win, not who got here first. There are great posters here but if the site sucks, you won't have as many invested readers.
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I like ksusan’s suggestion of a clear way to download our own posts, like a running commentary, our own online journal. As it is now it’s click on one, go and read, go back, click on the second one times infinity. It’s very tedious. And it would be nice to have an easy print function either chronilogically or by topic.
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No, it should not be who got here first. It should be who posted most. Silent readers do not make the site. They may utilize the site and find value in it. But reading alone does not add anything. Members with thousands of posts, those people took TIME AND PERSONAL EFFORT to contribute what they did. They have earned to right to be heard with a bit more respect and weight than a newbie like me. I feel it would be a grotesque disrespect if the Powers did not heed the words of their long time contributors; The members who have taken the time and made the effort to help so many other people. So it's not who got here first, but who took up the hammer and put their back into it. We all matter, we all have valid points. But some have earned their seat at the head of the table.
As for good ideas, if we could all agree what 'good' is that would sure make things easier! I think it's that very issue that is at the heart of this controversy. What is good?
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the goal if i understand correctly is to make the site easier to navigate esp for newbies. Weighing their opinions less doesn't make sense to me. Everyone is free to express their opinions and to say that someone that has 1000 posts over x amount of time which by the way, how do you draw the line, is not fair. Obviously anyone who will br filling out surveys will be registered and not lurkers.
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Mods, over and over, you've posted the same words. Okay then. If BCO is really serious about wanting to help patients "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" and if you want to fulfill your commitment to have "medically/expert-vetted content that is continually updated and added to", then as a first step, before any major redesign, I would suggest that BCO do a complete overhaul of their information pages.
Back in the days when I was posting regularly, I would often include links in my posts to support information that I provided. As much as I would have preferred to include links to the BCO information pages, I rarely did. This was because the BCO information pages unfortunately often don't provide the best and most up-to-date-information. Here's one example:
We have many women, particularly younger women, who come to the discussion board very worried because they've been told they have dense breasts. Which of these links explains breast density better?
From the ACS: Breast Density and Your Mammogram Report
From the Mayo Clinic: Dense Breast Tissue: What it means to have dense breasts
From BCO: Having Dense Breasts
- On the BCO page, it says: "Research has shown that dense breasts: - can be 6 times more likely to develop cancer" Note that this is the only risk stat that is provided.
- There was one research study, from 2007, that compared the risk of post-menopausal women with extremely dense breasts (BIRADs Category 4 density) to the risk of post-menopausal women with the least dense breasts (BIRADs Category 1 density). This study found that the women with the highest density (representing approx. 10% of post-menopausal women) were 6 times more likely to develop breast cancer than those with the lowest density.
- To my knowledge, this is the only study that has ever found the risk to be that high. A subsequent meta-analysis of several studies put the risk for these women more in the range of a 4-fold increase. Still very significant, of course.
- More importantly, however, the findings from this study are specific to that one small group of post-menopausal women. Within the broader population, approx.75% of pre-menopausal women have BIRADs Category 3 or BIRADs Category 4 density. As the ACS page notes, "Having dense breasts is very common and is not abnormal." And as the Mayo Clinic page says, "Women with dense breasts, but no other risk factors for breast cancer, are considered to have an average risk." This is actually intuitively logical. High breast density is so common among younger women that it's already baked into the 'average' risk numbers. Those who have high density breasts do have greater risk than those with lower density breasts, but it's younger women with low density breasts who are unusual and who may therefore have a risk level that is lower than 'average'.
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- On the BCO page, it says: "Steps you can take: If you have dense breasts, there lifestyle choices you can make to keep your breast cancer risk as low as it can be: - maintaining a healthy weight - exercising regularly - limiting alcohol - eating nutritious food - never smoking (or quitting if you do smoke) Along with lifestyle options, many doctors recommend additional screening for women with dense breasts. This might include MRI scanning and ultrasound. "
- Do any of these lifestyle options actually have anything to do with breast density? To my knowledge, no.
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If a pre-menopausal woman comes to the discussion board and posts her concerns about having dense breasts, providing her with the BCO information page will lead her to believe that she is extremely high risk to develop breast cancer (6 times more likely) and that she can lower her density by eating nutritious foods. And that's why I never would include the BCO information page link with my posts.
This is just one example, a particular hot-button issue for me (and one that I have posted about many times over the years). I have more examples of where the BCO pages are just not up to par, and I suspect others here could add to the list. My intent is not to start this list or to have everyone pile on. My intent is to make the point that since you are only at Phase I of the redesign, before you think about integrating the information pages with the discussion board, and before you work to find ways to drive more people from the discussion board to your information pages, perhaps you should take the time to review, update and improve the information pages on this site.
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Good point. Not to pile on too much, but in case one example is not enough to illustrate well-founded concerns about the quality and accuracy of information on the current version of the main site, here is another example. Either your medical oncology expert didn't expend much effort examining the content of this page or your editorial process permits changes after expert review, leading to the introduction of material errors (and undermining the value of expert review).
The very first sentence on the page is inaccurate/misleading:
"Chemotherapy is used to treat all stages of breast cancer . . . "
Then, under the subheading "Chemotherapy for early-stage disease", it states that:
"Early-stage breast cancer generally means cancer that is classified as:
- stage 0
- stage I
- stages IIA and IIB
- some stage III"
However, In the context of cancer chemotherapy, "Early-stage Breast Cancer" typically refers to certain stages of INVASIVE breast cancer, and in this context, does NOT include Stage 0 disease (i.e., pure DCIS) which is by definition NON-INVASIVE.
Farther down on the page it states:
- Chemotherapy usually is NOT recommended for non-invasive, in situ cancers such as DCIS because they have very little risk of spreading to other parts of the body.
"Usually" is a vague term, which could mean anything from "almost never" to "more often than not"--the latter which would imply that some significant fraction of patients with pure DCIS (pathologic Stage 0) are appropriately treated with "chemotherapy" (not true). ("Endocrine therapy" is not "chemotherapy", so that doesn't explain it.)
Chemotherapy is not recommended for those with pathologic Stage 0 disease (pTis N0 M0)(i.e., pure DCIS) under applicable clinical consensus guidelines NCCN and ASCO, and around the world.
Even the rare DCIS patient with unexplained pTis N0(i+) disease is more likely to be offered endocrine therapy alone. That type of rare diagnosis is beyond the scope of your top-line general information pages. The inclusion of Stage 0 on this page is just going to confuse the vast majority of Stage 0 patients, and is not helpful.
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http://www.breastcancer.org/treatment/chemotherapy/who_gets_it
"Who Gets Chemotherapy?
Chemotherapy is used to treat all stages of breast cancer, including cancer that has come back in the breast area and breast cancer that has spread to other parts of the body (metastatic disease). Chemotherapy treatments are tailored specifically for each person's unique situation. When deciding on which chemotherapy medicines would be best for you, you and your doctor will take into account the stage and other characteristics of the cancer, such as hormone-receptor status and HER2 status. You'll also consider your menopausal status and any other treatments you've had.
Women who are pregnant can safely have chemotherapy after the first trimester. Visit the Treatment for Breast Cancer During Pregnancy page for more information.
Chemotherapy for early-stage disease
Early-stage breast cancer generally means cancer that is classified as:
- stage 0
- stage I
- stages IIA and IIB
- some stage III
(For more information on the specific characteristics of each cancer stage, visit the Breastcancer.org Stages of Breast Cancer page.)
Chemotherapy is used after surgery to remove the breast cancer to get rid of any cancer cells that may be left behind and to reduce the risk of the cancer coming back. In some cases, chemotherapy may be used before surgery to shrink the tumor so less tissue needs to be removed. . . . .
. . . .
- Chemotherapy usually is NOT recommended for non-invasive, in situ cancers such as DCIS because they have very little risk of spreading to other parts of the body."
[Post EDITED in substantive ways]
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Thanks for helping us identify content in need of updates. We have passed along your comments to our editorial team. We
appreciate your feedback! -
Moderators, thank you for jumping on the update content issue so quickly. It would be great if we could get responses to our other comments and requests for information so fast!!!
Out of curiosity, may I ask why you chose to place this thread under the "Acknowledging and Honoring Our Community" forum where it languished with little comment until we brought it to the forefront, and not under the "Comments, Suggestions, and Feature Requests" forum where the stated purpose is "Request new or improved features, report bugs, & view upcoming changes?" Can it be moved?
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Mods, I appreciate that you are taking the information that BarredOwl and I provided back to your team, but I want to reiterate that I was providing just a single example. My bigger point was that before you drive more traffic to the BCO information pages on the main site, there is a need for your Medical experts to comb through the material to check for errors, outdated information and information that is subject to misinterpretation.
As another example, similar to what was presented by BarredOwl, the 'Treatment for DCIS' page also mentions that chemotherapy “is generally not needed for DCIS". This is incorrect. Chemotherapy is never recommended for DCIS (at least according to the most respected / accepted treatment guidelines). Similarly, the explanation of when an SNB might be done on someone with DCIS is inconsistent with current treatment guidelines. Interestingly, is also inconsistent with the information that BCO itself presents on it's pages about Sentinel Node Biospy. On those pages, the explanation of what an SNB is and how it is done is cursory and confusing. It's also noted that women with DCIS who have a lumpectomy should not be offered an SNB, but there is no explanation as to why. So should DCIS have an axillary lymph node dissection instead? That seems to be the implication.
Back on the DCIS page, the explanation of the benefits of radiation are potentially very misleading. Average recurrence risks are quoted - 30% risk without rads; 10% invasive cancer recurrence risk & 15% DCIS recurrence risk after rads. The problem is that the 'average' applies to pretty much no one. So while 30% might be accurate as an average for all women who have a lumpectomy for DCIS, and while BCO does note that individual risks may be higher or lower, the range is so large that it means the 30% figure is not even close for many patients. Recurrence risk after a lumpectomy for DCIS could be under 10% for someone with a small, low grade DCIS and wide surgical margins, and could be as high as 50% (or even more) for someone with a large, multi-focal high grade DCIS with narrow surgical margins. Seeing the 30% figure on a reliable, trusted website could unknowingly lead women with either of these diagnoses to inappropriate treatment decisions. As for the 10% invasive cancer risk and 15% DCIS risk after rads, no source is provided by BCO for those figures and they seem off to me. From my understanding, rads provides approx. a 50% risk reduction benefit. This means that a 30% pre-rads risk would be reduced to 15%. Of this 15%, approx. 1/2 of the recurrences (~7.5%) will be invasive and 1/2 will be DCIS (~7.5%). How does BCO come up with 10% and 15%? As an FYI, here is detailed analysis on this topic from 2014 which seems to support my understanding: https://www.sciencedirect.com/science/article/pii/S0167814014002692
Mods, let me say again that if BCO truly wants to help women diagnosed with breast cancer “make the best decisions for their lives", the information pages on the main site must be updated and rewritten by Medical experts.
Can we get a commitment that this will be done, before any changes are made to drive more readers to these pages?
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Beesie, yes it is something we are committed to addressing as rapidly as possible.
And we appreciate your help!
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I agree with Beesie and BarredOwl's comments. As an instructor and trainer, I'm well aware of how information is accreted and syllabi and PowerPoint presentations can become internally inconsistent or out of date over time. It can be useful to go back to one's core objectives and outline for review and update, then actually examine each chunk of information for relevance, accuracy, clarity, and placement. This is a tedious task, but the preliminary stages are a great place for interns to make a meaningful contribution. I went to college very near your office, so I know you're in a location with many bright undergraduates at hand
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Mods, Thank you
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Re the page I commented on above regarding chemotherapy not being indicated for Stage 0 disease under consensus guidelines, please also note that DCIS plus microinvasion is NOT a type of Stage 0 disease (pTis N0 M0). This is because the presence of any microinvasion(s) (i.e, pT1mi disease) leads to upstaging under AJCC staging criteria. Depending on the N and M status, pT1mi disease can be Stage IA or higher.
BarredOwl
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Melissa, Ms. Wohl, and Moderators,
It's been a number of weeks since we have again asked for updates and involvement. So far, no response--other than moving this thread to the forum where it should be have originally. What is happening? How can we be more involved?
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Having us members involved is an oxymoron if I’ve ever heard one!
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True kathindc, and members here are not even really valued. We're not regularly communicated with and often left in limbo instead of following up on our questions and concerns. This is too bad since while the forums are the lifeblood of BCO, contributors exist in a realm of opacity like I've never experienced on other similar sites. Personally, this doesn't worry me, because the camaraderie amongst people here more than makes up for the institutional disdain.
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Mods,
I have kept away from this thread for a number of reasons but being away, allowed me to kind of circle ...and
I have to ask
- besides the forums that we all seem to agree are a great asset to the members and BCO 😊 - what does BCO stand for and what are its projected aims? Apart from overhauling the site.
I am not being optuse, I enjoy and value the site because of the forums - but like a 5 year old I have to ask - what else do you do?
There may be many things I do not know.
Simply tells us/me what that is. No fancy words - just what you do.
And then take that and tell the sponsors.
See how that works.
PS
If part of your mission is to provide medical information to women - I have over 90 dedicated articles sitting in my mail box - I have not read them - and ...I read a bit - I am unlikely to.
It does not work that way - unless I spot at least a word/author that interests me I am unlikely to open a PDF
😊🌷
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Wildplaces, thanks for your message! We aren't ignoring you, and will respond by Monday!!
Ceanna, Thanks for reaching out. We are actively working to raise funds to resume the important work of redesigning and rebuilding the site. For where we are now, probably the best way for members to help is to suggest ideas to help us raise the necessary funds. You are a great help by being so supportive on the site, and with us. With appreciation, Melissa and the team
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Still don't get whats wrong with the way it is that you are asking for funds.
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Mods, after everything that’s been said in this and the previous thread, what you are asking the members of the discussion board to do is help raise funds...
...for changes that have been poorly explained by BCO Management
...and that raise major concerns among many of us
...and that don’t appear to be necessary or desired by most of us speaking out.
To me, this pretty much summarizes the whole issue we have here.
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Totally agree with Beesie. At this point of repeatedly asking what's being revised, why it being revised, and why you think you have to raise $2.5 million for a website revision you can't seem to even explain to a member, I'm more than a little flabbergasted that you would ask us to help you raise money for a revision I couldn't begin to explain to others or support myself.
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Wildplaces, We really appreciate your thoughtful post and allowing us the time to thoroughly and thoughtfully respond.
Since the start of our organization in 1999, our mission has been to help women, men, and their loved ones 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.
We have focused on delivering on this mission by creating medically reviewed content on all aspects of breast cancer and providing an online platform for peer support in our discussion forums. Not all of our community members read our medical content, just as only a portion of the 23 million people who visit the content areas of our site each year make use of the discussion forums.
Our goal in redesigning and rebuilding the site is to encourage more people in need of our help to benefit from more of what we offer. We know that the medical content we create with the guidance and input of the country's leading experts can be invaluable to the person who is facing difficult decisions for her/his care or the care of a loved one. And we know that the firsthand experience of community members who have faced those same difficult decisions is also invaluable to people in need of support.
We believe that the time to transform Breastcancer.org is now. The depth of knowledge necessary to manage this complex disease is only deepening. As our founder and chief medical officer Dr. Marisa Weiss often reminds us, "Breast cancer is not a one-size-fits-all disease." Medicine is making enormous progress in recognizing this, and new scientific discoveries point to more personalized, more precise treatments for the prevention, treatment, and survivorship of breast cancer.
We know that we have to do more to help each person be the best advocate for their own health. Specifically, we want to offer you:
· Better integration of our expert content and peer support on the site so you have the opportunity to learn from leading medical experts and patient experiences. We hope to create a more seamless experience and to surface more of the member-generated stories on our site.
· Improved member profiles to help you find others in the community who are like you and, should you want, to receive relevant content (articles, podcasts, videos, etc.) and community discussion topics based on where you are in the journey. That is, to be able to get you the right information and support at the right time.
· New tools to help you organize your health information in one place so you can easily access it every day from anywhere, when you need it; to guide you toward clinical trials that might be right for you; to help you manage side effects and stick with your treatment; to give you lifestyle tools to manage any risk of recurrence or make healthy choices in accordance with your survivorship plan.
· A simplified, easy to navigate, and beautifully designed modern website experience. We recognize that many people who rely most on our site are in the throes of a difficult cancer situation. More multimedia content, such as videos and podcasts, can help people learn and connect without always having to read a long-form article for information.
In preparation for redesigning and rebuilding the site, we have been reviewing suggested improvements from community members, conducting user interviews to test the design, and developing a detailed list of technology requirements for important areas like profile authentication (making sure sign in is safe and secure) and natural language processing (helping structure texts so they can be used to match members to each other and relevant articles).
Another important step we are taking towards the transformation of Breastcancer.org is fundraising. We are actively working to raise funds to resume the important work of redesigning and rebuilding the site (we have currently paused). For where we are now, probably the best way for members to help is to suggest ideas to help us raise the necessary funds. We are working on a spring '18 appeal message with the hope to drive donations from visitors to our site and members of our community, and we will be reaching out to some members for their feedback on our messaging before launching.
You are a great help by being so supportive on the site and with us.
With appreciation, Melissa and the team -
Mods thank you - to me that was a fair response.
Will you please elaborate on the construction of the TOOLS paragraph.
What will those TOOLs consist of ?
I would love to have anyone chime in with needs/suggestions.
😊🌷
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