Provide feedback/advice about our site and campaigns?!

Thanks, Mods, for the most detailed response to date to our concerns re the website revamp.

Two questions:
"Not all of our community members read our medical content...".
What percentage of community members do read the 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."
What percentage of the 23 million people who visit the content areas do make use of the discussion forums?

The extent of what I'm guessing is a large fall in usage of the community pages in recent years is a topic of interest, because, obviously, more community members would get BCO cranking back to the vibrant forum it once was. And the obvious opportunity to get even one percent of those 23 million people from content to community would add 230,000 people to the community. Likely this would crash the site! Could you also ask the site analytics person if those 23 million are unique visitors, whether it includes repeat visitors, or if in fact it's just 23 million page views. Getting to the bottom of these stats would be vital for making a plan, so I hope you can answer here on this topic.

I don't follow the "if it's not broke..." school of thought here, because I know you have a mini crisis and need to move the site in different directions, with different features, and more integration. I know this will also boost your site revenue from ads because there'll be more visitors to much more targeted content. This is an income boost given in this industry.

Many of us here have strayed to other sites servicing bc patients and survivors such as Facebook groups based on cancer type, locality, gender, etc, Chat sites like Wisdo, and info link sites such as Twitter. Many of these people would surely return once BCO got its mojo back.

Re fundraising. Have you really exhausted all Silicon Valley options for a pro bono refurb job?

Have to say, I nearly never look at the other parts of the site because I don't trust them. Beesie and Barred Owl pointed out glaring errors, but there are other more subtle biases that have disturbed me over the years. The most obvious is the unwavering promotion of mammography and the suppression of information not supportive of its benefit.

At this point, I'll never fill out my diagnosis specifics. The whole process is too creepy.

Wildplaces, that wasn't really the meat of what I was saying, and I probably should've just left it off.

The crux is that if I don't trust this site's information to be both as unbiased as possible (admitting that for humans no-bias is impossible) and accurate, why would I ever want to look at their informational content?

"I did not want specifics of what is currently being done badly - I hoped for broad brushes of what is needed to begin with."

Wildplaces, I don't think any discussion about the future direction of this site should take place without first fairly and openly assessing what the site currently does well, and what they do poorly.

I don't think we can ignore the "poor and outdated" medical content, because as I read through BCO's list of proposed changes, it appears that the intent of their changes is to expand the prominence of their expert medical content and make this information more directly and privately available to people. If this site truly had "the most up-to-date medical information and research" and if the information really was "presented in an objective and responsible way, with no bias to commercial interests", I might not have the same level of concern about some of the proposed changes (note that the quotes in this sentence come from BCO's Press Kit). As for where BCO stands relative to other information available on the internet, as someone who has regularly included links with my posts for 12 years, I can assure you that better information is available on many other sites on the web. Frankly, better information is available all over the discussion board. There are selected members who regularly post information that is substantially more clear, detailed, current, accurate, understandable, actionable... than what's found on the BCO information pages, on a wide range of topics including most benign conditions (cysts, calcifications, etc.), BIRADs, breast density, LCIS, SNBs, DCIS, breast reconstruction, research summaries, etc... (I've highlighted only the topics that I am most familiar with).

Separate from my concerns about the expanded and private dissemination of medical content that is to varying degrees cursory, inaccurate, outdated and subject to misinterpretation, the proposed changes raise two other broader questions:

1) Can a website whose primary function is to provide huge amounts of information to the mass market also accurately provide highly specific targeted medical information to (thousands of) individuals? The BCO mission, "to help women and their loved ones make sense of the complex medical and personal information about breast health and breast cancer" pretty much covers everyone. The proposed changes suggest however that BCO wants to move towards individualization, i.e. "be able to get you the right information and support at the right time". Can BCO (or any organization, for that matter) do both things effectively? And if the individualization isn't accurate, what is the harm done?

2) Is a large public website an appropriate venue for individuals to be inputting highly personal medical information? Is the firewall between the public and private sections of the site strong enough? Will the tracking and 3rd party advertising targeting that's done on the public site be carried over to private side where people input their most personal information?

As I read BCO's goals for the redesign and rebuilding of this site, it seems to me that the path they are on moves BCO into territory that should be reserved for our medical teams, who deal with us personally and privately on a one-on-one basis.

"If bco intends to "manage" me based on my info, I will delete everything in my "info" profile."

nihahi, even if you delete your info, BCO still has it stored and available for in-house data mining.

The BCO privacy statement explains this. You can read it HERE.

When you fill out the My Diagnosis section you get this preamble:
Tell us as much as you can about your diagnosis, and we'll send you content and research updates that are based on your unique situation. We know that you don't get all your diagnosis information at the same time, so you can come back and enter more information as you get it.

When you fill out the My Treatments section you get this preamble:
Tell us about the treatments you may have, the treatments you're undergoing, or treatments you've completed, and we'll send you content and research updates that are based on your unique situation. You can enter and edit as many treatments as you'd like.

Note: Adding a new treatment is private. You can update them to public under Settings. Public treatments will appear in your Discussion Board signature.

When you fill out the My Profile section you get this preamble:
You and your doctor will consider personal information such as age, ethnicity, and family history of breast cancer when making test and treatment choices. Tell us this information, and we'll send you content and research updates that are based on your unique situation.

Note: Adding Personal Info is private. You can update information to public under Settings. Public information will appear in your Discussion Board signature.

I believe profiles are at the core of BCO and they imply as much. They assume people here discuss mostly by disease stage, type, treatment, etc, and they likely believe this helps the community make comments on posts. They also form a database of diagnoses, treatments that would be valuable for research purposes. Just how, of if ever, this material has been used is a question I hope BCO will answer here, because when they say "information is private" what on earth does that mean? Private to who? The privacy concerns of many here really need to be addressed, since our information is in both the public domain and the BCO domain.

I assume you have legal advice. Giving someone tailored recommendations based on diagnosis sounds like practicing medicine.

Mods, all this fake consultation is a bit wearying, so if this is a long, years-long, continuing process, we can relax and get on with blogging as we please under the regime ancien.

Wildplaces,

First thing, I agree with Traveltext about the community/discussion board. That is by far the strength and uniqueness of this site.

Second thing, they do a great job of getting BCO to almost always show up first, and often second and third.... on internet searches. If you are googling anything to do with breast cancer, it's virtually impossible to not find and click on a BCO link. No surprise then that they get 23 million visitors to the site every year.

Third thing, their information pages are quite thorough, covering most topics relevant to those diagnosed with breast cancer. Unfortunately, the organization of topics is confusing (even after all these years, it always takes me several tries to find the topic I'm looking for) and the point has been made the poor/outdated quality of the content.

Considering how prominent BCO is in Google searches, if they were to put their efforts into fixing the medical content and the organization of their information pages, they could be a truly excellent site, and could probably much better hold on to many more of those 23 million annual visitors.

From their recent posts, it's clear that BCO are frustrated with the input they've received from many of us, likely because it's been critical and not fully supportive of their future direction. Given this response, I will bow out of this discussion.

And the Mods breathe a sigh of relief!

I am bowing out as well, not that I was here that long.

I have a fundamental disagreement with making information more available to people when the information is biased and unreliable. This plan is self-serving, and shows a lack of self-awareness.

Ms. Wohl, Melissa, and BCO board. I have continued to read this thread and am growing increasingly concerned about how disconnected BCO appears to its members. I have read your posts critical of what appears to you as "friction" when we try to address concerns and I feel devalued. I have read your posts asking us for our input, then later stating that you gave us the information too early. You ask us for funding, but won't state how you plan to spend $2.5 million (not sure how you could come up with that figure if you didn't have an idea or plan on what was going to be done). BCO keeps saying it plans to target or tailor to the information and its marketing to the diagnoses of its members when many of us are removing our diagnoses or specifics from our profiles because we are concerned about our privacy. The Outbrain fiasco last year demonstrated how upset many were with targeted information such as what you propose now--even if it did pertain to their diagnoses--but you don't seem to want us to be involved in this commenting about your remodeling of the website. You ask why we wouldn't want your "tailored" information and don't recognize our desire for privacy or from information overload. BCO indicates it wants to be a used by members as a place to compile their medical information when most of us would never trust BCO to do that. BCO indicates it wants to be the provider of medical information and many have indicated it could never replace or supersede the in-person, individualized information we receive from our medical providers. You ask how to better serve those new to the BCO site but then don't seem to want to hear about our experience with the website. Many have pointed out medical misinformation or outdated information and BCO indicates it wants to target more of this same information to more of us. We ask for data to support your plans and seldom get responses. Even simple corrections such as correcting the bloated, non-current, members, forums, and topics numbers used under the blue box area in the upper left of the threads pages, or removing the over-large cell phone picture which requires scrolling down on the login page, (totally unrelated to logging in on that page with a laptop) don't get done and now BCO wants us to trust you to make major changes without input.

I value the members of the BCO threads and return to glean information from them and "help" others new to their diagnoses in areas where I can share my experiences. I see providing that platform for sharing on a secure website as BCO's major mission, leaving me wondering why BCO has such a seemingly grandiose vision of being a targeted marketing medical information provider, personal medical records data warehouse, and being the end-all, be-all to everyone including those new to the site. Perhaps the BCO board and management needs to step away for a time, re-envision its mission, vision and values, and realize that to be a leader in any field, you must have followers to whom you can sell your ideas. I'll be waiting for you.

Wildplaces, I'm just withdrawing from discussion on the website revamp, that's all. I'm staying in the community to help and/or be helped.