Provide feedback/advice about our site and campaigns?!

Artista964

Fully agree spookiesmom.

kathindc

I feel you are right Spookiesmom. BCO is going to do what they want. It is apparent in the infrequency of the Mods’ responses and what they say. To me it’s basically the same response but phrased differently. BCO is like a dog on a bone when it comes to tailoring information for its members. They won’t let go of it. One thing that I didn’t like when using the main site and still don’t is how cluttered the pages are with ads and other items. The constant clicking to get to the next page of information becomes tiresome. I prefer pages that go from one topic to the next and if need be you can move around because the page has anchors. (Hope I explained that correctly.). Mods have wondered why there is limited response to the Announcements. Well, there is no eye appeal to them. Very bland looking. They don’t need bells but they do need to be worked one. And yes, the huge picture on the sign in page if you’re on a laptop needs to go. Again, no eye appeal to speak of and its removal has been repeatedly requested. So glad the $2.5 million was needed so the work could be finished in 18 months. It was made to sound that this project was ready to implement. Now it sounds like this is a pipe dream, far off in the fu

SugarCakes

allow reconstruction photos

MinusTwo

So - I read here but don't post often. Here's my take:

Correct the misinformation in the data pages. Don't target anyone with anything. We don't want to be targeted. Leave the discussion threads alone. Those are the best part of the BCO & the best support for any new person checking in. I'll continue to read but I too have become cynical about the value of our feed back.

MO-Beth

I would like to see a topic/board/forum where people could post articles and/or talk about what causes breast cancer or what may cause breast cancer or what they think causes breast cancer.

I have no family history. I do have two of the common risk factors. Diet and exercise, blah blah blah, cure everything is what we've been told for 50 years now. I'm not so sure that's true because that awareness has increased and more and more people are exercising, but breast cancer has increased, and not only in people who do not diet and exercise. There are other factors that need to be explored.

Thanks.

sandcastle

WE....are not owners of the Site....MOST, likely they will do a good job and everyone will fall into place using this site as we have done all along....Liz

Artista964

if people are donating then they are in some part, owners of the site.

goodprognosis

I'm bowing out of this debate too. We just seem to be going around in circles................

Outfield

In reply, and then I will not be responding after this:

Moderators, of course I meant BCO's informational content, not the community forum. I realize not everybody is savvy enough to know to beware of information received in such forums, but personal autonomy is one of the most, if not the most, important fundamental principles in this country. We have the right to put ourselves in position to believe bad advice from laypeople.

Wildplaces, this statement nearly sums up one of my concerns:

Surely if one walked away from any clinical practice where one disagrees - we would both have to find something else to do for a living. I agree with you on mammograms and quite likely on a few other things beside that. In Australia the lack of support for MRI is a financial decision. It's about money. Women should be told and be given options.

In the US, People walk away all the time from clinical practices with which they disagree, both patients and doctors. But BCO has no credentials to be a "clinical practice." If the goal is to be the premier website for information, then that information should be up-to-date, accurate, and as unbiased as possible. I have not reliably seen those qualities in the information section, so it concerns me that BCO is going to work harder to make visitors see it.

Moderators

Hello All,

Just a few comments:

"friction" referenced the less constructive remarks, not the comments that disagree. A productive discussion does not mean that we need to be in agreement. In fact, quite the contrary. We value our members very much, or we wouldn't be doing what we do, or reaching out to you.

All the planned features that we would like to implement are ideas from our members, and our visitors (to our editorial content and community). We have thousands of members providing feedback, naturally, over the years and not just those on this thread.

As we've stated, everything will be opt-in and opt-out. If you do not find it helpful to have suggested content or threads, you can "opt out". As we've also said, we will be updating our content in the "migration" to the new CMS (content management system). We are very invested in providing accurate, up-to-date educational information to help guide our members in talking with their healthcare team, and make sense of the complex medical and personal information about breast cancer, so they can make the best decisions for their lives.

The member database (number you see in blue box) will also get adjusted in the migration. It is not a simple task to "clean" our member base, however. Many members join, post a bit, go away, and return years later, for any one of many reasons. Some members, join, post like crazy, then stop, but still check in from time-to-time to read. We need to also sift through those members who are no longer active (e.g. they have moved on, passed away), but have thousands of valuable posts that should not get deleted with the deletion of an account.

We agree that our announcements look lack-luster and would benefit from improvement. This will be part of our upgrade as well.

Things had been moving along with the transformation, but like with many things, many of the items on the wish-list (including those mentioned above) became much more complex and expensive, therefore the current "pause" to reevaluate, consult, and fundraise.

We started this site in 1999 to provide reliable, complete, expert-vetted and up-to-date educational information about breast cancer, and a supportive peer-to-peer community, free of charge to our visitors. We remain committed to this mission and will hopefully provide an updated site and experience that will be even more helpful to our visitors.

Thanks for all you do,

The Mods

Cowgirl13

Just speaking personally here...i started on this board in 2009 and it was absolutely wonderful. My home group is the Triple Positive section that was started by TonLee and I still check it each day. I am disheartened with the way BCO is going now. I am 72 years old and I have lived long enough to see that, as my Grandmother used to say, 'things never stay the same'. That is sadly what is happening for me here. But I will say that I'm so grateful I was able to have had the experience of being part of this for the first 5 or 6 years. For me it was a godsend.

The good news, personally, is that I am coming up on 9 years since I was diagnosed and I am cancer free at this time.

VLH

Since the expensive revamp seems inevitable, I'll address one component mentioned, adding more multimedia content. I recognize people respond to different methods of learning. I typically hate videos, unless the visual content is meaningful, and especially podcasts. When I encounter them, the first thing I do is look for a transcript. Nothing is more frustrating to me then watching a video of panelists, recalling there was a point of interest, but not remembering where in the 8 (or 28) minute video said content was located. I care about the panelists' credentials, but watching them speak usually adds little value for me vs. being able to skim through content of minimal interest while doing a screen capture our copy/paste from written material to save information of importance to me. Videos and photographs of, say, prone radiation positioning options vs. supine are helpful. At the risk of being rude, talking heads, much less so. Multimedia content is much more demanding of system resources and I agree that viewing can be problematic for those with slow Internet access.

I usually find the medical content too generic to be useful and I come here because of the community forums, which provide real-world experiences and a sense of camaraderie. I understand that the education level of readers varies widely and there has definitely been a steep learning curve in reading medical journals; however, other than Breaking News links, I admittedly don't see BCO as my first source of information. I leave it to others more knowledgeable than me to address the bigger issues.

Wildplaces

On mammograms and MRIs

( Beesie would give a much better crafted answer 😊)

Here is the 101 version.

For detection rounded easy to remember numbers

Mammogram 50 % sensitivity (lower dense breasts) 60 % specificity

Ultrasound 70 % both sensitivity and specificity ( if you have a Mammogram and an ultrasound those numbers are up a bit)

MRI 90 % both sensitivity and specificity

Myriad of papers on this....

https://www.ncbi.nlm.nih.gov/pubmed/19485945

I have picked this one because it SPELLS out that mammograms are useless in dense breast tissue - sensitivity in the 20s.

Hence the age at which mammograms are recommended as screening tools is the age at which breasts become less dense....

http://onlinelibrary.wiley.com/store/10.3322/canjc...

If link does not open - it is the American Cancer Society Guidelines from 2007 (yep - not enough has changed) MRI screening is recommended for women with strong family history.

At 1 in 8 women getting breast cancer with a 30 % recurrence rate of early disease - why does one requie a family history to get a high sensitivity specificity test

BarredOwl

As a person who does better with print, I also hope that written transcripts would be routinely made available for video content.

You mentioned that many Community users are unaware of the Main Site. That's because the link to the Main Site from the threads is not sufficiently prominent. This is why people can't find the Main Site-- the link is off in the upper right hand corner in microfont:

Again, I will recommend that a link to the "Main Site and Information Pages" be included in the blue menu at upper left.

Conversely, many Main Site users are unaware of the Community, also not a surprise given the low prominence of the two links to the community (one at the extreme upper right of the page; and one in small pink font, at the end of a long list).

▼

◀︎

Clicking on the "Community" options currently directs one to the "All Topics" page. Sadly, the lengthy announcements above the Topics (often applicable to only a subset of the community) conceal the content people are looking for. Please create a separate location for Announcements. They are not "Topics" and do not belong on the "All Topics" page. They impede viewing and access to the list of topics.

The links to the Community from the Main Site should be more prominent, and should direct one to a much simpler, less busy page from which one can choose to view the "All Topics" list or navigate to the "Active Threads" [EDIT: or to the "Help Page"].

Since the overhaul is a long way off, these improvements in current navigation should be implemented in the short term.

I note the statement of mission, which focuses on providing information and support:

- We started this site in 1999 to provide reliable, complete, expert-vetted and up-to-date educational information about breast cancer, and a supportive peer-to-peer community, free of charge to our visitors. We remain committed to this mission and will hopefully provide an updated site and experience that will be even more helpful to our visitors.

The challenges to doing this well are substantial, and I welcome efforts to improve the organization, accuracy and currency of the information content.

Re this proposed feature:

· 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;

If you are thinking of getting into the business of storing health records, that seems like somewhat of a departure from your historical mission.

Presumably, you have received input from others that led you to believe there is significant of interest in this capability among current members, although what the level of interest of among future members would be, considering their likely options, is unclear. (Personally, I have less than zero interest in such a feature.)

Providing the level of skilled IT personnel and continuously updated security necessary for the storage of sensitive health information going forward may be a significant driver of costs. Moreover, there are a number of applications currently available and increasingly, large technology companies are moving into the health space. These large, commercial technology companies are likely to provide safer and more sophisticated services than this small, non-profit organization with a total annual revenue (05/2016) of $3,543,343 per Charity Navigator. Because of their vastly superior resources and technology capabilities, these tech companies will be able to regularly update the features and capabilities of their systems and regularly update the security of their platforms in ways you cannot hope to compete with. (Perhaps one day, even our health care providers will provide better centralization of and access to our records.)

In order to "make sense of the complex medical and personal information about breast cancer" in the interest of informed decision-making, patients need to receive complete copies of relevant records and reports for their review and records. In my view, a bigger problem than where to store information is that many patients don't or can't get their hands on pertinent records in the first place. Many are not even aware of the existence of the Radiologist's written report, as distinct from a form letter. Many do not appreciate that some top-line summary or extract in a patient portal is not a complete copy of their radiology report, their biopsy report, or their surgical pathology report. How would they know? They often do not receive original copies of their own Oncotype and MammaPrint/BluePrint reports. It is a disgrace.

It would be valuable to create some new content directed towards:

- the types of information, records and reports (e.g., Radiology, pathology, prognostic test reports, genetic test results, other) that patients should routinely seek for their review and records (the pages addressing imaging, pathology, or other tests should recommend obtaining complete copies of the related reports);

- the types of information generally contained in different types of imaging, biopsy and surgical pathology reports (e.g., under applicable guidelines);

- information that these documents may need to be separately requested, legal entitlement to medical records in the USA, and possible sources and points of contact for obtaining such materials;

- descriptions of various approaches to managing and organizing health records, as well as the pros and cons of currently available options (e.g., applications, security concerns), acknowledging that different people may choose to take different approaches depending on their situation, on-going needs, and personal preferences.

I have been donating to this organization since January, 2014, although admittedly, I don't sign my checks "BarredOwl." I would consider resources expended by this organization to develop a health record storage system to be a waste of time, (wo)manpower, and treasure, and a diversion from the central mission that led me donate in the first place.

BarredOwl

[EDIT: or to the "Help Page"].

Wildplaces

Outfield,

I know you are out - still the points you raise are crucial.

No BCO is not a clinical practice.

However the widespread of internet and the many support,social sites, blogs mean that patients, especially chronic patients get a lot of information of varying quality and accuracy about their disease. How they process this information depends as much their personal values and beliefs as it does on the hard data available. In chronic illness family, lifestyle, financial burden are huge factors loosely lumped with QoL and probably underestimated in terms of impact on health choices particularly when proposed treatments have a high side effect profile and low positive yield.

The cleaning up of BCO medical information - necessary - it would need to a continuos process - the Mods have agreed it will take work and it has been stated several times that most women do not use it extensively except maybe as starting sprints and then they hit the "words" to look for on to discussion boards - they find the strong posters - two above are obvious - they keep asking until they get their desired answers. They take that list to the MO and craft a plan. It's a reality of modern medicine.

What is hard with breast cancer - the ground keeps shifting - take two recent areas of interest

( yep the mammogram, ultrasound, MRI bit is clear...)

- is immunotherapy an option in the nonimmunogenic ER positive group ?? - how do you crack that one - there is work toward making that answer a yes

- can HER negative patients on first biopsy benefit from HER positive drugs ?? - I am talking about Herceptin later in the course/progression of disease - the answer to that seems to be yes - the heterogenicity of moving tumours means there may have subpopulations of HER positive or mutations within HER.

Now to get back to disagreeing in practice.

Let's me diverge and give you the silliest of examples...

In an ideal world fasting times for food should be adjusted to individual medical history. Patients with risks for delayed gastric emptying should be fasting for longer for solids.

Patients can drink a glass of water ( just water, not tea, soup, coffee...) to help with a dry mouth up to two hours before going into surgery. Strong work shows prolonged fasting to be detrimental postoperatively - no provisions made for this.

Patients fast overnight for a morning list and after a 0600 breakfast for an afternoon list. If you are done as patient number 3 on the morning list - you have fasted from 10 pm to 11 am for water and if you are 80 years old as dry as a chip. Our practice advises patients of the water provision. I contact children individually with specific age adjusted instructions. There are no hospitals provsions within the admission notes in the four places I work in on the GC - all running 10-14 theatres, not small.

Why - you ask? Financially if patient 1 is not available we need to be able to get patient 2 on the table early. The threat of having a theatre hold up for 30 minutes has a dollar sign to it. The reality is that patient 1 is rarely not available, and that often patient 2 has not arrived because hospital admissions are stagerred for financial reasons - admission staff numbers.

The College of Anaesthetists has been lobbying on this for about 5 years - at least - there are guidelines on Peri-operative fasting. 😊

So ....that we all manage to talk to each other and that most patients feel we have done well and seem happy with the treatment/hospital service to me is a never ending proof of human kindness.

Money and time - when will start talking about it ?? - education and health.

Moderators

BarredOwl,

Thank you for your thoughtful and detailed suggestions. Please note, however, that by "health information" we are not referencing a member's personal medical records, but rather articles in our content which could be served to members based on the information they provide in their profile (which they can opt in or out of). So, much of your response is moot, as we are not looking to gather and record personal medical documents.

To your other points, we do currently address much of the information you mention. Please see the extensive section on Managing Your Medical Records, which includes information on how to gather your information, what it should contain, organizing your information based on treatment, and ways to maintain your medical history. Also, the Screening & Testing section explains what each type of breast cancer screening, diagnostic, and monitoring test is and what it shows. Within that section, there's also great information on Test Results & Medical Records, which offers insight on getting your results and keeping your records.

We agree with your points about having more prominent links to and from the community and main site, but our goal is to more seamlessly integrate the community and main site so that information you may not know that exists in the community can be shared in the main site and vice versa. There's so much wonderful, practical information here in the boards that could help others who are bogged down in the more clinical version (main site). Similarly, in the boards, those members who are here for support and practical information may also be looking for clinical definitions or other information that we can offer to them from the main site. Our goal is and has always been to HELP our members receive the best information for their situation, and that includes all facets of the organization.

Thank you again for your thoughts.

--The Mods

BarredOwl

Re:

· 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;

Thank you for clarifying that by "your health information" you were "not referencing a member's personal medical records, but rather articles in our content which could be served to members based on the information they provide in their profile (which they can opt in or out of)."

I am very glad indeed to learn that you are not planning to "gather and record personal medical documents."

I confess I was confused by the plain language of the bullet, including the use of the possessive pronoun in the phrase: "your health information." In my experience, "my health information" cannot be found in the content of a web site or in research papers. In addition, the organization previously sought to gather personal medical information in an earlier (and ill-conceived) pathology report project.

In the above bullet, you use the word "organize" whereas your recent explanatory remarks use the word "served." I note that those terms are not synonymous, and create some ambiguity about what is being contemplated. I can be "served" information without any means to "organize" the information.

By the way, I shut current "information serving" function off, due to the receipt of irrelevant information, and---worse in my mind--- the non-receipt of relevant information. I now check periodically check "Breast Cancer In the News" section on the Main Site to manually identify what is of interest to me.

Information Content:

Thank you for the links. I took a look through those pages. They are helpful in some ways, and not so helpful in others.

For example, this section Getting Your Rest Results did not make clear to me that there are:

(1) Routine Form Letters with limited information content; and

(2) the more detailed Radiologist's Written Report, that ordinarily includes a detailed observations; impressions or conclusions, along with a BI-RADs category rating; and recommendations for further management (e.g., further imaging needed at this time; return to routine screening; short-interval follow-up; tissue biopsy).

The section states:

--- "Some states now require that mammogram reports be sent to the patient at her home."

Further down, it says:

---"Whatever test you have, make sure that all of your doctors and nurse practitioners are sent a copy of the report. When you sign in for the test, let the receptionist know that each one is to receive a copy of the report to follow. You can even come prepared with a list of your doctors' and nurses' names to hand to the receptionist. Ask if you can get a copy of the report and, if desired, copies of the films or digital images saved to a compact disc (CD). It can be especially helpful to have the images if you think you might want to get a second opinion about a suspicious finding."

Well, my state has a law like that, so I will get my "report" in the mail, right? NO, the routine Form Letters mandated by state law to communicate top-line imaging results and density information do not include the type of detailed information that is found in the Radiologist's written report. The latter needs to be separately requested.

The terms "mammogram report" and "report" on this page are confusing, and do not make clear the difference between Form Letters and the underlying Radiologist's Written Report, which should be obtained.

Current Navigation:

Re: "We agree with your points about having more prominent links to and from the community and main site, but our goal is to more seamlessly integrate the community and main site so that information you may not know that exists in the community can be shared in the main site and vice versa."

Again, in my opinion, "Since the overhaul is a long way off, these improvements in current navigation should be implemented in the short term."

Why not make such simple navigation improvements now, to ensure your current valued members receive the full benefits of the Main Site and the Community?

BarredOwl

Moderators

BarredOwl,

Thank you again for your thoughts. Re: Getting Your Test results content; we've passed along your suggestions to the editorial team.

Re: current navigation; unfortunately, this fix is not as easy as it may seem to you, as it does have a technological component, and will be addressed if/when the site and content management system are updated.

Thank you again.

--The Mods

MO-Beth

TOTALLY AGREE! I won't come here if it isn't a 'community forum' format. I won't watch videos. I have a TV.

BarredOwl

My background isn't in tech, but I would have hoped that at least the appearance of the links (currently small font on a busy page) might be changed. The content of the home page is routinely updated with new information, so I was hoping that at least the prominence of the links to the Community could be improved.

Outfield

I thought of this during my time not on the boards.

It would be nice to be able to block and unblock certain topics, so they don't appear. I do run through the "Active" topics list, and there have definitely been times where it would have freaked me out less if I'd been able to block the Stage IV topics and times when I did not have the patience for all the "Worried" topics. I know that's nothing along the lines of what you've been considering, but it would allow people to personalize their experience a bit.

MinusTwo

Outfield - I add things I'm interested in to 'my favorites'. That does include a number of Stage IV topics since I care about the issues and a quite a few of the people. Mainly I just check the 12-14 posts that appear in my favs each time I sign on. You can always delete the a topic from favs later if you want.

Moderators

Outfield-

You do have the option of blocking topics! At the top and bottom of each page in a topic, there’s a “Block Forum” button. If you block a topic, it will no longer appear in active topics for you. You can manage your blocked topics on your profile page, if you’d like to ever unblock one.

Traveltext

On December 1, 2017 Charity Navigator, the watchdog standard for non-profits, posted its new reviews and rankings. BCO has moved from being a four-star organization to a a three-star organization. The details can be found here:https://www.charitynavigator.org/index.cfm?bay=sea...

BCO continues to post the four-star rating logo on its website so, along with the proposed site changes, I'd suggest this needs to be updated.

Moderators

Traveltext, we have indeed update the logo in the footer months ago. Could it be that it's cached on your browser?

Traveltext

Thanks, I've cleared my cache, but it's still appearing here:

https://community.breastcancer.org/my-profile/trea...

https://community.breastcancer.org/my-profile/arti...

https://community.breastcancer.org/my-profile/diag...

https://community.breastcancer.org/my-profile/arti...

Moderators

Hi Traveltext -- this should be corrected shortly. Thank you for bringing this to our attention.

nihahi

Hopefully the correction will begin with why BCO lost a star.

WifeWBC

My 2 bits on all this is more a running commentary of the current site, and what it has been for me, and many others there past 5 years. I suggest my case is not so untypical.

I started posting on breastcancer.org forums when first diagnosed in 2013. I spent much of the first 12 months of my treatments, scouring the pages of the forums, looking for information and posters experiences with everything related to breast cancer. I joined the march 2014 chemo group so that I could share that experience with quite a few other posters going through the same ordeal. I also joined a group that had already gone through chemo the previous year, simply to get an understanding of what I could expect. The forum became a tool to help me find valuable information I feared I would either miss, or simply not get first hand from my own health care system. I became educated.

In 5 years, like me, I suspect many of the posters I shared some stories with, have long since stopped posting here. Life goes on. Perhaps poster longevity is something that is being considered. It probably should be. Retaining those people who fall be the wayside, in a non commercial manner, should be something you consider.

Indeed, I think I may have posted about 10 times in the past 3 years, as treatment tends to settle down, and life sort of settles back down for those lucky enough. Still, I find a need to revisit some of my own older posts and ask new questions. I think it is important I am able to continue to do this, without it becoming to difficult, the or impossible to find.

I would point out that, while there are some aspects of the forum could be improved, the look and feel of the place has hardly changed since I started posting. I personally find this not a bad thing. The same yellows and red colour scheme tells me that I am in the right place. The awkward menu system has hardly changed. It's a bit of your own house feel, if you get me meaning. Stuff where it was left

Change for the better is often good. Change for the sake of it, well.

ceanna

I, too, wonder why BCO lost a star. Any explanation?