Provide feedback/advice about our site and campaigns?!

Thanks, Mods. Sorry, I'll try to catch it next time.

I would like to a part of the user testing.

Sorry I could not attend the Zoom meeting yesterday but scheduling would not allow. At one point you said there would be a variety of times available to participate. Is that still coming?

Would moderators or participants post a summary of Wednesday's discussion. Thank you. Ceanna

Thanks Mods, is there a link to a record of the Zoom event?

I agree with everything Ceanna said above. I come for the discussion and support, and it is working great for me. Tracking and intrusions would drive me away from BCO discussion boards, a huge loss. I don't know whether to support BCO at the moment because I can't tell what BCO is up to. There are a lot of words in that list of goals, but no clear explanation of what is being planned. I am grateful to BCO and I want to believe the best and be helpful, but I am concerned.

I agree completely with the above posters, ceanna kathindc and ShetlandPony

I also think not enough posters know this discussion topic is even going on as there are so few posts on this thread.

Could the Mods bump the topic or keep it on top of the forum/threads pages in bigger print so everyone would notice it?

Edited to say 'keep it on top'.....

Hmm, lost my original post and of course can't remember my exact wording. So here we go with the new one.

With so few people doing the Zoom meetings compared to active members, I would think BCO would get the hint that this is not the way to go for a discussion regarding their changes. Or is this really their intention? IMHO this is very suspicious.

I think we need to spread the word about this thread to the ones we are active on and let the members there know about these goings on and how important their feedback to this matter would be. This is one of BCO's best kept secrets.

edited to say...

Nevermind

Of the ~20 members posting in this thread, two or maybe three joined the call. Did some attempt to log in but could not?

I believe (but am not certain) that the call details were also posted in advance in the Announcements section at the top of the All Topics page. But I think that the revised call-in info was only posted in this thread, which I happened upon only by chance (thanks to Hopeful82014).

Noon Eastern time might be lunch hour for those on EDT, but in other time zones in the US and elsewhere it is not a convenient time. Perhaps holding another call at noon Pacific Time might be in order, given the foul up in executing the Jan. 17th call. It should be heavily publicized in advance. Providing an agenda, background information, and details of plans and features under assessment or consideration in advance of the call might promote more dialog and input. It is also good practice for productive meetings.

How the broad goals (1-4) of the revamp outlined above on Jan 22, 2018 08:05AM by the Moderators will be implemented in practice does not appear to have been finalized, based on the remark in the Jan 17th call that it is not clear what it will look like and that beta-testing will be later.

But in the call, I think there was mention of some in-person user testing in NY and PA, and this was also noted above: "As we work on the community sections of the site, we are bringing forward the ideas you and others on the site have offered about features that are important to you. We are inviting community members to join us for user testing throughout this phase. User tests are a combination of [1] physical, in-person sessions (thus far in NYC and Philadelphia) and [2] virtual sessions over Zoom and/or Skype."

If there has been some in-person user testing (i.e., there are concrete ideas under assessment), I would like to know what concepts or features have been tested to date by in-person users, which ones are being discarded, and which ones are being carried forward.

If there are features that have been identified for future user testing, can you provide a description of them?

I would also like to know if the user testing via virtual sessions over Zoom and/or Skype is limited to those who are participating in the in-person user testing or is open to others (since it is remote).

BarredOwl

Traveltext, you're right. And I know better. I vowed to myself that I wouldn't post on this topic again. I know I shouldn't. I know that the major decisions about the direction of the board are made. Still, after all my years on this board, I do feel invested here, and I just can't help myself. So here goes.

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1. Tailor a person's user experience to his/her situation so we can better provide the right information at the right time to support him/her
If you are a newly diagnosed person, you get information specific to that, if you are a caregiver, you get information to help guide you, etc)

How exactly do you plan to do this?

- Will it be through the information provided by members in their profiles about their diagnoses? To my post of December 23^rd in this thread, profiles are often wrong and inaccurate, so how can these be used to provide "the right information"?

- Will it be through something like The Pathology Report Project, where individuals scan in their diagnosis information? Enough has been said about how this is a misguided idea. Topic: Pathology Report Project

- Will it be through questions or a drop-down menu in which individuals will state what information they are interested in? As we all know and most of us have experienced for ourselves when newly diagnosed, newbies often (usually) don't know what questions to ask, or what information to ask for. Someone might come here looking for very specific information, not knowing that it's not relevant to her own situation, or not realizing that she is asking about only one of many options available to her, or not understanding that she is looking at only one small piece of the total picture of what she needs to learn about her diagnosis and treatment options.

Even knowing someone's diagnosis correctly, and knowing what stage of the process they are at with regard to information gathering and decision-making, how will someone at BCO decide what is "the right information"?

- Will you provide all the available information on any given topic (clearly, impossible to do) or will there be some degree of filtering and editing involved, which inherently presents the risk of bias?

This goal strikes me as veering too closely into areas that should be reserved for our doctors. I find it concerning, and possibly dangerous. What happens if the "wrong" information is passed to a patient and the patient makes treatment decisions based on this information and ends up with a less than optimal treatment plan? BCO of course has a role in providing information, at a high and generalized level, about diagnoses and treatment options. I believe however that individualization should be left to our medical teams, who have access to our medical records, who talk to us privately, and who truly under our diagnoses and personal situations.

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

The information pages of BCO and the discussion board provide two very different types of information and seem to appeal to different users. From reading all the comments that have come before on this thread and other threads that have discussed the upcoming changes, it seems to me that most of the people who come to the board come specifically for the support of their peers, and to share information, experiences and conversations with others going through a similar diagnosis or support experience.

- Is combining the medically-reviewed and community-generated content what the community here wants?

- Is it what the readers of the information pages want?

- Do you risk confusing people by combining medically-reviewed data with what are in effect personal thoughts and opinions? How will you do this so that the line between the two remains distinct and clear, as it must?

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4. Create a simple & beautiful design that makes use of modern technology to showcase our multi-sensorial content
Knowing that people consume information in different ways, we hope to continue to add more formats of content on important topics and showcase the content contributed by our members throughout the site

What do you mean by "showcase the content contributed by our members throughout the site"?

- Does this mean that you will be taking stories provided ("Share your story of genetic testing" "Would you share your Stage IV story with us". etc.) and highlighting these stories in other places on the site? Or will you be cherry-picking posts or quotes from our posts and putting these elsewhere on the site? I realize that BCO does own all the content on the site, including anything written by community members, but will individuals be asked (or even just advised) before any of their content is used elsewhere on the site?

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6. Support paid ad campaigns with minimal disruption to the user's experience.
Ads are an important source of revenue, only mission related ads connecting you to relevant treatments.

Mission related ads connecting you to relevant treatments? BCO is deciding what is a "relevant" treatment? Relevant for whom, and on what basis? Isn't that for us to decide, working with our doctors? What am I missing here?

That about sums up my assessment of the upcoming changes.

Thanks all for the interesting, thought-provoking comments. Please don't stop posting, even when we are feeling discouraged by the seeming lack of results. I do hope we can spread the word on other threads and get more members involved so BCO knows members care what happens here. I think right now BCO counts on few people responding or providing input so they can go ahead with existing plans, which seem to lack our input in the first place. Looks great in reporting to their funding base--we did such and such and got input, but I doubt they include the number of participants in those.

Beesie, I appreciate your thoughts. #1 is a huge concern as I've already commented on about privacy and tracking. Your comments really made me more concerned about #3. I can't even imagine anyone posting here on the threads wants their posts integrated into one with the medical information--in many cases they were personalized responses to a specific person's questions. My first reaction to your comment was that if that becomes the case, I would immediately delete my posts they integrate!!!! My thoughts are that BCO is using our postings to generate higher numbers hitting on the "professional" information. I know I got to BCO threads by Googling and hitting the threads and not the "content." I had have very little need for the professional information BCO wants to emphasize--that I can get through my doctors. The threads are where we come to share which is the most valuable to me, but that use probably is not a good "sell" to the funding sources.

BarredOwl, I was a participant in the first Zoom meeting. I think there were only 6-7 of us including the two from BCO. Other than starting this thread (but not promoting its use), I have not seen any follow through on comments and suggestions we made. I think, like now, the need and the goals for the redesign were set long before we were aware of what was happening. I wasn't available for the one time slot they offered the second time (initially we were told there would be other time slots), but it looks like I didn't miss anything. During the first Zoom, we were told there was a small local group that had no problem with the Outbrain ads, which eventually BCO was rallied into removing from the threads so I don't have a lot of confidence in any proposed changes being run by this very small group (no offense testing group members).

My question for Ms. Wohl and the moderators is: How did you come up with the "goals" you list in your 1/22/18 post here? You know how little the efforts to track and target members were appreciated in 2016 and you had to back out from Outbrain ads on the threads. Now your goals are again to track and target. You haven't sold those goals to anyone here and so I wonder why you are pursuing? The moderators post that these multi-million dollar changes are to make a "less stressful" experience and you talk about improving "user's experiences," and on the last "Fright" thread you talked about user anxiety. It seems to me that every time you make these comments, you are ignoring the concerned members here who had hoped you were listening. We're trying to politely ask you to allow us input, provide comments that won't be ignored, and offer our help. Again.