Provide feedback/advice about our site and campaigns?!

I would like more emphasis on research and new drugs and possibly vaccines. What really is upsetting to me is the awareness and prevention part of the campaign. While exercise and overall health are good for people it doesn't prevent you from getting breast cancer. I cannot tell you how many people believe they are at little to no risk of the disease. In many cases it is just pure bad luck, not genetic or health related.

While finding the disease as soon as possible is better it doesn't guarantee you won't die from it. It is a very serious disease and needs to be conveyed that way. Stop focusing on you lose your hair and making it fun and pink, people suffer from treatments and the doctors and drug companies down play it, your lucky to be alive so don't complain.

The focus should be on treatment that doesn't destroy your QOL and health and definitely a cure.

This is a continuation of the much disliked thread Take the Fright Out of Breast Cancer™ Let's use this thread to retire the old thread that is no longer on the Active Topics list.

traveltext. Yes, they did start a new thread in Nov. I missed it too as I was out of town for a couple of days and it only had 2 replies. I privately asked the moderators after a couple of weeks of not seeing they had started a new thread. Here's the link Provide feedback/advice about our site and campaigns?! It might be beneficial if this discussion moved to that thread so we can retire this particularly unpopular thread subject line. I'll post this same message to that thread to put it in the active list.

I am very disappointed BCO has made no effort to update us (those of us who participated in the last online video conference) and everyone else after the Nov. video chat, but I hope to attend the proposed Jan. video chat to learn more, and, I hope, encourage BCO to actually, meaningfully, hear our voices. They keep talking about how much it will cost, but we still do not have an idea of what they are changing, after telling us in November we would have opportunities for input. I, too, think this model works well for us, and like several have mentioned, we little use the medical portions of the BCO site and keep coming back to the discussion boards to help others newly diagnosed.

Thanks to ceanna for guiding me to this new thread.

I responded to a mods pm asking for input on some "choices"...never heard back from them.

I am with traveltext...I adamantly believe the proposed changes need to be seen on an "open setting". I don't give to charities or belong to groups that keep their mandates and goals and processes hidden except for a select group of "in the know" members.

I for one, have had it with "behind closed doors" processes. The "small group" decision making policy is what has led to some pretty outrageous campaigns in the past.

Thanks to all for posting here. I missed this thread when it was first created as did the majority of us it seems. Perhaps this led to BCO thinking we didn't want to have input or we were satisfied with what they were doing. I can see from comments made here, that we have the member talent to provide important input, but, unfortunately, BCO has not provided the base of information we need--what changes are proposed, what do members want to see, etc? Do you think it more helpful if we started another thread to provide input to BCO--I wonder if BCO members are not posting their comments because this thread was started by the moderators?

like i said in the other thread imo this site is very easy and is fine. Overhaul usually means more bells and whistles and getting lost. 2.5 mil is beyond nuts when the site is already easy for all. If they want to raise that kind of money, give it to metavivor to find a cure.

I'm the husband of a BC patient and she has a very complex BC history. I would like to see a simplification of where you list various treatments and BC history. I still haven't figured out how to write a comment at the beginning of treatment and BC history.

TravelText, thanks for sharing that video. I don't do Facebook. I don't think the video very telling or compelling. The idea they seem to be pushing is personalizing-- as in targeting us individually--which scares me!!! The last time BCO was personalizing was the horrendous targeting they tried with the Outbrain ads--awful until they moved them off the discussion boards after we protested for months!!! I cannot imagine they think we want that!!! Raising $2.5M toward an unknown result--count me out!

BCO seems to be going in a direction not wanted, or needed, by members!!!!!!!!

Meow, I hear you. I think Outbrain targeting was based on the thread we click in to, but I think BCO could easily use our diagnoses also and I have long contemplated removing mine for privacy and security issues. Sounds like this new "personalized" targeting will use.

BCO, it's time to explain how you plan to "personalize our experiences."

OK, Here's the recent discussion, before the old thread was locked.

Nov 13, 2017 08:44AM - edited Nov 13, 2017 09:06AM by Moderators

Hi All,

Yes, we will start a new thread tomorrow for new BCO things coming up, where we could recruit members for feedback. This will include looking for people to review designs, funding campaigns, etc. While we'd love EVERYONE'S feedback on the new design, we hope you understand that this could be seriously overwhelming .

We had 20 community members user-test the first ideas - in our Philadelphia and New York offices. We are having 20 + members look at some images this week to provide some feedback. We'll be recruiting around 20+ members to user-test a first developed version in the next two weeks, which will be done via Zoom, so we'll be able to open it up to folks outside of our region. And then another 20 members with the next iterations, and so on.

So, in other words, we really find the 1:1/small group intimate user-testing much more beneficial as we test navigation. This enables us to involve as many invested community members as possible throughout the process, and hear/incorporate their ideas.

At the same time, we'll be reaching out to community members to gather opinions (again either in small group fashion over Zoom or 1:1) about our funding campaigns, and other going's on we are considering.

We have a very large, amazing and talented community, and we want to tap into as many people's insights as possible. With great appreciation and admiraton! The Mods and BCO Team

(and, as always, open to hearing your thoughts!)

Dec 21, 2017 07:37AM kathindc wrote:

Just got an email from BCO. They need $2.5 million to rebuild the site over the next 18 months. They want help reaching thei phase one goal of $500,000 by December 31.

Dec 21, 2017 07:52AM Hopeful82014 wrote:

Is it just me or does that $2.5 million figure seem awfully high?

Dec 21, 2017 09:13AM Traveltext wrote:

Any amount could be spent on this site. But until we understand what is intended it's impossible to assess that figure.

My point has always been that a Silicon Valley outfit would do the work pro bono.

Dec 21, 2017 09:25AM Spookiesmom wrote:

thought that's why they had that awful fundraiser.

Dec 22, 2017 12:15AM Rosabella wrote:

why do they need to rebuild this site? I think it's just fine. 2.5 mil? Wow. Does sound too high. Wouldn't it be cheaper to create a new site and when done link it to move people over?

Dec 22, 2017 12:18AM Rosabella wrote:

pro bono or for cheaper..

Dec 22, 2017 05:06AM Moderators wrote:

Hello All,

We would welcome the opportunity to share with you and discuss our plans and reasons for the rebuilding of Breastcancer.org.

To learn more, please join us for a real-time discussion on Wednesday, January 17th @ 12 noon ET. We will follow-up in early January with video-conference details.

We look forward to connecting with you all soon and wish you happy holidays.

Thanks!

Dec 23, 2017 01:40AM - edited Dec 23, 2017 01:41AM by nihahi

Wasn't there supposed to be a "boob-fun-filled" Halloween frolic to raise these funds?

Wasn't there supposed to be a new thread started to continue this conversation?

Why can't the plans just be "put out there" for the entire community to see?

Dec 23, 2017 05:45AM Lisey wrote:

Nihahi, because this is NOT a democracy and frankly when you put something to a large group, EVERYONE will hate something. I advise clients to just stick with the major shareholder/decision makers on things like this because otherwise things would take forever and never get off the ground.

Dec 23, 2017 05:48AM - edited Dec 23, 2017 05:49AM by Lisey

I think what bothers me most is everyone posting and complaining are using a FREE SERVICE and not doing any work to actually make it happen. Sure some of us donate, (and I'm one who has) but it's simply to say thank you for the forum. Why do people feel they have a dog in this website when they only 'use' it for their own benefit? If you hate what BCO becomes, leave. If enough people leave, BCO will evolve to the market they are targeting but this community forum is NOT the market... This community is a HUGE donation to US... let's be grateful rather than so damn complaining.

Dec 23, 2017 06:26AM Rosabella wrote:

i think this site is easy and fine as is. Adding more bells and whistles which usually is when doing overhaul. I like simple, not so many go here for this and that then trying to get back to where you were is more steps. Jmo

Dec 23, 2017 06:32AM Hopeful82014 wrote:

I agree with Rosabella. While there are a few tweaks that might be welcome, I don't see that a major overhaul is needed, nor do I see the value of investing $2.5 million in doing so. That seems almost obscene to me.

Dec 23, 2017 07:44AM Traveltext wrote:

We're being asked to help and make suggestions on a site revamp, so those of us who want to will no doubt do this. That the existing site is OK is another valid opinion. Lisey, we are making the community section of this site interesting, informative, and popular by being active participants in all the many threads. That is the work that makes this site happen. In any case, BCO is a charity that receives funding from the very pharmaceutical companies that supply the drugs that treat us, so I don't believe we have to feel guilty about whether we are financial supporters or not.

Dec 23, 2017 08:05AM - edited Dec 23, 2017 08:13AM by Beesie

$2.5 million, for something that most likely could be done pro bono? $2.5 million, to rebuild a site that is not broken and is in fact working quite well? Yikes, that does bear explaining.

I agree with Nihahi that if BCO are interested in sharing information about their plans, it would be preferable if they could post the information here on the discussion board so that everyone can easily access the information at the time of their own choosing. Of course it's BCO's choice to share this information or not.

Lisey, as someone who has been on the board almost 12 years and who has over 8,900 posts, I can assure you that I have not been using this site for my own benefit. That may have been true for the first 6 months I was here, but since them, most of my posts have been written for the assistance of others. The time and effort I have put into my responses over these years has been my 'donation' to this site.

This discussion board would not exist but for the contributions of people like Traveltext, nihahi, BarredOwl, marie5890, MTwoman, MelissaDallas, djmammo, Annette47, SpecialK, ElaineTherese, Exbrnxgrl, Binney4 and the dozens of other people who selflessly take the time to write posts that offer advice, support and comfort, and who do the research and digging to provide helpful and accurate information to all the men and women who come to this site every day with their questions. To suggest that these people, and all the others who contribute here, are "not doing any work to actually make it happen" is astonishing.

No offense to the people who run breastcancer.org, but frankly when it comes to the rest of the site, I've found other sites that I feel have more thorough, accurate, up-to-date, and helpful information about all the various aspects of breast cancer diagnosis and treatment. So to me, this community forum is what BCO is all about and the forum simply wouldn't exist as it does today, as a thriving discussion board, without the active participation of the board members. Therefore we are the biggest stakeholders in this community forum. We are the community. That's why I agree with Nihahi that BCO should put the information out in a way that it can be easily accessed by all of us who participate on this discussion board. And that's why I think we have every right to voice our opinions, raise concerns when we have them, and offer suggestions as to what we believe will and won't work as the site is updated and changed.

In the end, however, BCO own this site, and they make the rules and they get to decide. Of course.

Edited to Add: I notice that this thread does not appear in "Active Topics". I guess that's BCO's way to limit discussion on these issues.

Dec 23, 2017 08:36AM Traveltext wrote:

QUOTE:

Nov 13, 2017 08:44AM - edited Nov 13, 2017 09:06AM by Moderators

Hi All,

Yes, we will start a new thread tomorrow for new BCO things coming up, where we could recruit members for feedback. This will include looking for people to review designs, funding campaigns, etc.

Mods, did I miss this new thread?

Dec 23, 2017 09:20AM - edited Dec 23, 2017 09:22AM by ceanna

traveltext. Yes, they did start a new thread in Nov. I missed it too as I was out of town for a couple of days and it only had 2 replies. I privately asked the moderators after a couple of weeks of not seeing they had started a new thread. Here's the link Provide feedback/advice about our site and campaigns?! It might be beneficial if this discussion moved to that thread so we can retire this particularly unpopular thread subject line. I'll post this same message to that thread to put it in the active list.

I am very disappointed BCO has made no effort to update us (those of us who participated in the last online video conference) and everyone else after the Nov. video chat, but I hope to attend the proposed Jan. video chat to learn more, and, I hope, encourage BCO to actually, meaningfully, hear our voices. They keep talking about how much it will cost, but we still do not have an idea of what they are changing, after telling us in November we would have opportunities for input. I, too, think this model works well for us, and like several have mentioned, we little use the medical portions of the BCO site and keep coming back to the discussion boards to help others newly diagnosed.

Edited to make the link work.

Dec 23, 2017 09:51AM kathindc wrote:

Thank you ceanna for the link. It would have been nice if the Mods had put that info here and then made this thread unavailable for posting. Keeping those of us who were active on this topic in the dark was one way not to get the feedback they are asking for from us.

While I found this site useful, I must say that I, too,found the same information on other sites. What attracted me to BCO is the help so many members were willing to give. What keeps me coming back is the camaraderie.

Dec 24, 2017 02:39AM - edited Dec 24, 2017 02:42AM by nihahi

Thank you ceanna for the link.

Lisey...there is so much in your 2 posts that I disagree with, on so many levels, that I sense there is little benefit to even attempt to respond to you, other than to say this...shut up and blindly accept what "decision makers" want to do is a dangerous policy...and not just on BCO. FYI...on the new thread, the mods specifically ask for conversation and input.

Beesie...thank you for another well written and insightful post.

Mods...if you want to move this topic to a new thread, I agree that locking this thread and providing a link is the best way to do so.

21 hours ago Traveltext wrote:

From the BCO Facebook page:

https://www.facebook.com/breastcancerorg/videos/10...

20 hours ago Spookiesmom wrote:

not everyone is on FB.

19 hours ago Hopeful82014 wrote:

Well, I took a look at that video on facebook and did not find it compelling in the least. If that's a sample of the caliber of work they intend for this site I can state right now that I wouldn't expect to find it any more useful that its current form.

14 hours ago - edited 9 hours ago by Wildplaces

... the "decision makers" are not going to be able to make ANY decision if they do not achieve at least a good chunk of the projected donation funds.

I think that is the nuts and bolts of this case.

And saying ignore all opinion of those with breast cancer and the men and women who treat them is absurd.

Worse, it does not work!

Back to two questions:

1. What if any changes would benefit the site?

2. What is the most cost effective and time efficient way of achieving this?

Adding a note on future direction - can BCO, and does it want to as part of its mission, expand its role outside the site in a meaningful and above all measurable, transparent way?

12 hours ago kathindc wrote:

Lisey, if this bothers you so much, why do you come back to it. Are we not allowed to voice a differing opinion if we find something like this campaign distasteful? I was going to ask this before when you didn't like the way the discussion was going and came down on everyone but thought twice about it but now I must ask: Do you or did you or a family relative work for BCO? Your negativity toward those who voiced valid concerns leads me to that conclusion. Just saying.

3 hours ago Spookiesmom wrote:

👍

54 minutes ago Rosabella wrote:

exactly. It's one thing to make changes, it's your site, but to ask us to help you get 2.5 mil is nuts. Most of us are in a financial crunch and with possibly cuts to the so called entitlements which we as workers paid into, i find this absurd. Like i said, imo the site is fine. Raise funds to donate to metavivor.

OK, the new site. Should it have LIKE buttons to gauge post popularity?

Honestly, Traveltext - who cares about a post's popularity??? This is not sixth grade nor is this facebook. Now, if one could grade it for scientific accuracy, maybe that would be another matter.

Edited to add: I am NOT suggesting that we add a rating for any reason, just that on those addressing scientific issues it might, just conceivably, be of some value. That offhand comment was not meant as a request.

Isn't this Just Facts....But, mostly Human Emotional Expression....Liz

i see likes as a short cut to say i agree, saving time in typing out i agree so and so... maybe an agree button to prevent confusion.

Like many others, this site was a refuge for me when diagnosed and I am not exaggerating when I say that at the height of my anxiety/depression, I read these threads over 8 hrs. a day and during the night when I couldn’t sleep. I had the horrible habit of looking on the angels list and following someone’s first post through to their last. I am not sure why, but I must have been searching for similarities or differences between their diagnoses and mine. I was in a deep, deep hole and reading about others’ lives somehow helped, even those who didn’t survive, because it was in their perseverance and bravery that I realized that even if I do recur, I will fight for as long as I can. In addition, I learned so much about what I should be asking at the oncologist’s office and what to expect every step of the way. I didn’t even consider reconstruction until I read the 2013 thread and “met” those wonderful ladies who had so much camaraderie that they met in person. After I saw that most people said they were happy with their reconstruction, I decided to do it and the focus on something positive helped lift my depression. I still come here almost every day just to see if there is anything new to find out, especially about the Antihormonal drugs. My point is that it is the people that keep us here, not any bells or whistles. The human factor that can be so lacking in our everyday lives. And the fact that we are all in this together. Please don’t take that away.

The idea of a like button is a good one. I would rather do that when I'm in agreement with something someone say than to type out my answer. I know I've read this idea on other threads but nothing has been done to date on this.

I think the emails that go out regarding donations need to be tapered back. My in box seems to get bombarded by BCO with end-of-year donation requests and, to my chagrin, the Take the Fright Out of Breast Cancer Campaign. Nothing turns me off from donating, no matter how worthy a cause, than to get constant reminders.