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Topic: How to Nominate "Expert" Members? Need your help!

Forum: Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts —

Moderator generated forum to present our announcements or requests, organization and website news, blog entries and podcasts. Please do not post here if you are not a Moderator. Thank you!

Posted on: Aug 22, 2017 01:42PM - edited Aug 28, 2017 01:43PM by Moderators

Moderators wrote:

A suggestion has come to the Moderator team that we signify some members as "experts"/ "mentors" on the boards in certain specific topics in which those members have great knowledge and provide very helpful advice on a consistent basis.

The goal of elevating these certain important members would be to show "newbies" that those members opinions/advice/posts are valued among our other members, and should be strongly taken into account. Having an "expert member" weigh in on their questions will show that member (as well as other future members who may have similar questions/situation) that the response is likely a very good response and one that should be strongly considered.

So, we are wondering what you think the best method of identifying who these members would be, in order to not make our members feel as though we are playing "favorites" or weighing one member's importance against any others. We do not want this to be a popularity contest, either. Should this be a nomination process based on other members' suggestions? Should it be based on number of (helpful) posts? Should members nominate themselves as experts, and if so, how do we determine that they are in fact an "expert"?

We'd love any and all thoughts, suggestions, and advice on this idea we are considering. Do you think it could be helpful to have these types of members in our community? They're already here, helping our community day in and day out -- shouldn't we acknowledge them and give their opinions/advice weight?

Let us know your thoughts!
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Posts 31 - 53 (53 total)

Aug 24, 2017 09:35AM octogirl wrote:

I also think it is a bad idea, for the reasons many have articulated.

One additional issue that I am not sure has been discussed (and apologies if I missed it): one can be an expert in some areas of this crappy disease, but not others. How would one quantify that type of expertise? One could be an expert on the latest research, for example, because one follows it closely, but know almost nothing about the current political environment around bc related issues such as health care coverage (sadly, the areas of policy/politics and research appear all too often not to be linked in any meaningful way, not that I am an expert in that linkage or lack thereof...)

Then there is the difficult question as to what makes one an expert. No, it isn't just involvement in research or advocacy or outside organizations, IMO. On some level, we are all experts on our own situations. Isn't that why we often tell posters that they should trust their instincts and advocate for themselves?

I'd also be very concerned that some who are not designated as experts might feel hesitant to start potentially important threads, because they lacked a 'title' that others have....

Sometimes one's personal observations and circumstances can be as important as so-called expertise....

Octogirl

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)

Aug 24, 2017 09:48AM keepingon wrote:

I think this is a bad idea and very invalidating for users. The idea of an 'expert' level resource among a room full of stage iv patients is absolutely absurd.

keepingon ;) Chemotherapy 11/15/2010 AT Surgery 4/4/2011 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Radiation Therapy 5/3/2011 Breast, Lymph nodes Hormonal Therapy 7/7/2011 Aromasin (exemestane) Chemotherapy 5/26/2015 AC + T (Taxol) Radiation Therapy

Aug 24, 2017 11:19AM - edited Aug 24, 2017 11:37AM by Moderators

muska, here is the list of the VIPs. ThumbsUp http://www.breastcancer.org/community/vips. We were thinking of another round of nominations in the fall.

Thanks Everyone for your continued feedback on this idea. As we mentioned above, we decided to post this, as it was recommended by a number of our members on a different thread. Here is the link, if you would like to review:

https://community.breastcancer.org/forum/102/topic...

Some members have also suggested that we have a medical expert of our own to respond to the posts. Currently we have over 5,000 pages of expert-written/produced and reviewed content on our site (www.breastcancer.org). We try to provide helpful links to pages of our content, where possible, and post our research news articles as we write them. We also greatly appreciate all of you who provide helpful links, and reputable content sources to others in the forums.

Currently we do not have a budget, or the goal, to have a medical expert work to provide corrections in response to erroneous advice or information. The purpose of our discussion boards is to provide a place for support and exchange of experiences. We try to listen to everyone's opinions and suggestions, and implement what we can. The "expert"/"mentor" was one such example.

Based on the overall current feedback, however, having "expert" or "mentor" designations may be too fraught with issues. Feel free to weigh in further, or send us a private message.

Many thanks for the thoughtful feedback.

The Mods

To send a Private Message to the Mods: community.breastcancer.org/mem...

Aug 24, 2017 11:49AM pupmom wrote:

It's a bad idea because of liability issues. If you promote members as experts, and the advice they give is wrong, etc., well I'm sure you know where I'm going.

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-

Aug 24, 2017 12:16PM Moderators wrote:

pompom, We understand your point. What do you think of the phrase "mentor"?


To send a Private Message to the Mods: community.breastcancer.org/mem...

Aug 24, 2017 12:49PM Hopeful82014 wrote:

Until it was posted, above, I did not realize that BCO had actually produced and posted a list of VIPs. I find it really off-putting and am seriously considering leaving BCO because of this constant push to degrade the truly communal feel of BCO. I am so disappointed. (Nothing against any of the women listed - I just despise the idea.)

Dx IDC

Aug 24, 2017 02:10PM TWills wrote:

I think it would change the community feel. If I ask a question or want an opinion I would want everyone to feel comfortable responding. I wouldn't want someone to feel like they were going against a "expert" or "mentor". My Dr's are experts, I want a more personal opinion when I'm on this site. I just think it would cause arguments. I also see a lot of copy and pasting and although that might be helpful, it doesn't make someone an expert. Just my opinion:)

Dx 11/2016, IDC, Left, 4cm, Stage IIB, Grade 3, 1/14 nodes, ER+/PR+, HER2- Surgery 12/13/2016 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right; Prophylactic mastectomy: Right Chemotherapy 2/2/2017 AC + T (Taxol) Surgery 7/10/2017 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Radiation Therapy 7/31/2017 Whole-breast: Breast, Chest wall Surgery 8/27/2017 Hormonal Therapy 11/8/2017 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 3/2/2018 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap

Aug 24, 2017 02:59PM - edited Aug 24, 2017 03:05PM by Moderators

Based on the feedback from the large majority here in this thread regarding the "Mentor"/ "expert" idea, we will not take this idea any further at this current time. Hopeful, we are very happy to hear your opinion, and sorry that you had such a negative reaction. The VIP "program" was also an attempt to thank and recognize some exceptional members, all people who were called out by their fellow members. We are happy to reexamine this as well.

To send a Private Message to the Mods: community.breastcancer.org/mem...

Aug 24, 2017 03:13PM ShetlandPony wrote:

Mods, I really appreciate your running ideas by the community and asking for user input. The most successful designs are those made in cooperation with the people most affected by them.

I think the more complete, accurate, detailed, and up-to-date the articles on the "main site" are, the more we can refer newbies and others there for info.

2011 Stage I ILC 1.5cm grade1 ITCs sn Lumpectomy,radiation,tamoxifen. 2014 Stage IV ILC mets breast,liver. TaxolNEAD. Ibrance+letrozole 2yrs. Fas+afinitor nope. XelodaNEAD 2yrs. Eribulin,Doxil nope. SUMMIT FaslodexHerceptinNeratinib for Her2mut NEAD

Aug 24, 2017 03:17PM Moderators wrote:

Thanks, Shetland! We agree on both accounts!

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Aug 24, 2017 03:55PM Hopeful82014 wrote:

Mods in re: "The VIP "program" was also an attempt to thank and recognize some exceptional members, all people who were called out by their fellow members." I personally think that many of us thank and acknowledge, in our posts, those who are reliably helpful. It's also easy to send someone a PM to express appreciation. In a sense we all have our own mental "VIP" lists but mine may not agree with everyone else's. I simply don't see that we need community-wide "VIPs." In a world that is increasingly separated by artificial distinctions, such as in air travel, color of one's credit card, zip code, etc., I've found the egalitarian nature of this board refreshing. I'd hate to lose that.

Dx IDC

Aug 24, 2017 05:32PM octogirl wrote:

well, I did submit a few names as "VIPs" (including at least two who made the list) because I thought those persons deserved recognition....and looking at that list makes me so sad: I know one of the persons listed has passed on, and I think another has as well.

I think recognition is always a good thing. Perhaps there is a tile that is more descriptive than "VIP" however, since it does imply some sort of on-going special status? Could you call it a "Giving Back Recognition Honor" or something like that?

Dx 6/18/2015, IDC, Right, 2cm, Stage IIA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Surgery 7/16/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 9/9/2015 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 12/15/2015 Hormonal Therapy 1/15/2016 Arimidex (anastrozole) Hormonal Therapy 4/8/2016 Femara (letrozole)

Aug 24, 2017 05:53PM pupmom wrote:

Mods, the term "mentor" is much better!

Life is what happens while we're making other plans. Dx 10/18/2011, IDC, Right, 1cm, Stage IIA, Grade 1, 2/21 nodes, ER+/PR+, HER2-

Aug 24, 2017 06:23PM PattyPeppermint wrote:

why fix something that is working so well based on participation ?

I love Bco as is. Tganks

To God be the glory! Live, laugh, love... Life is way too short. Dx 6/2013, Stage IV, ER+/PR+, HER2- Hormonal Therapy 6/28/2013 Femara (letrozole) Radiation Therapy 7/4/2013 Bone Hormonal Therapy 7/31/2015 Faslodex (fulvestrant) Targeted Therapy 7/31/2015 Ibrance (palbociclib) Chemotherapy 6/30/2016 Xeloda (capecitabine)

Aug 24, 2017 09:30PM - edited Aug 24, 2017 09:44PM by Lita19901

This Post was deleted by Lita19901.
Dx 6/24/2017, DCIS/IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2+ (FISH) Surgery 7/20/2017 Lumpectomy: Left; Lymph node removal: Sentinel

Aug 26, 2017 08:04AM - edited Aug 26, 2017 08:11AM by Wildplaces

Expert - hmmm, that almost made me smile if my head would just stop shacking.

Really ??? We choose to listen, hear and share according to our needs and personality, not some star next to our Avatar.

WE are ALL experts - we live with it everyday!!

Please don't take the community out of the community. It's what I love about coming here.

As to the VIP list - great to acknowledge members who contribute, but if they are VIP where does leave the rest of us ? I am not being obtuse. Surely they can be acknowledged under a more sensitive denomination.

😊🌷



Dx 8/5/2016, DCIS/IDC, Left, 4cm, Stage IIB, Grade 2, 1/13 nodes, ER+/PR+, HER2- Surgery 8/11/2016 Lymph node removal: Underarm/Axillary; Mastectomy: Left; Prophylactic ovary removal Chemotherapy 9/11/2016 AC + T (Taxol) Radiation Therapy 2/21/2017 External: Lymph nodes, Chest wall Hormonal Therapy Arimidex (anastrozole)

Aug 26, 2017 10:27AM badger wrote:

hi, two thoughts:

1. Number of posts doesn't designate expertise. I'm a case in point. Played a lot of games during sleepless nights and really racked 'em up.

2. There's a pinned thread in the Forum: Acknowledging and Honoring our Community titled "BCO Community Member-Nominated VIPs!" It points to the webpage with the profiles created by the Mods but doesn't allow for us to add our own posts. Perhaps it could? Then we could give a shout-out to extra-helpful members.

7,715.5 miles walked ~ Find your calm. Move forward from this place. Dx 12/22/2009, IDC, 2cm, Stage IIB, Grade 1, 1/4 nodes, ER+/PR+, HER2-

Aug 26, 2017 11:28AM Brightness456 wrote:

I haven't been here long, so wouldn't feel comfortable offering an opinion about experts but wanted to say that I think it's really wonderful that the moderators actually listen to and value input from the members. Yet another reason to be thankful for this site.

Invasive ductal carcinoma Dx 6/2017, IDC, Right, <1cm, Stage IA, 0/5 nodes, ER-/PR-, HER2+ (FISH) Surgery 8/9/2017 Lumpectomy; Lymph node removal: Sentinel Targeted Therapy 9/13/2017 Herceptin (trastuzumab) Chemotherapy 9/14/2017 Taxol (paclitaxel)

Sep 27, 2017 10:13PM JFL wrote:

As an attorney, it is a risky idea from a liability standpoint and potentially dangerous for BCO members, as members would likely inappropriately rely on and make life-impacting decisions based on people's opinions that are not qualified at the end of the day to advise others in a formal way. By designating people as "experts", BCO is giving its stamp of approval and vouching for these people. Along with that comes the assumption that BCO has robustly vetted these people with a thorough level of due diligence. This could end up having very tragic outcomes for members if this is put into place.

Many oncologists would not even be considered breast cancer experts. My prior MO was the head of my cancer center and its research program, was then the head of the Cleveland Clinic's oncology practice in my state and is now the head at Yale. He treated hundreds of breast cancer patients. That does not make him a breast cancer expert and he would not consider himself one. He is a world reknown lung cancer specialist and although he treated a significant percentage of breast cancer patients, it was very clear in my treatment and the way he approached it that he was not a breast specialist. My treatment is night and day with my current MO who is a breast specialist. If my prior MO, with all of his pedigree, is not an expert in breast cancer, how could we begin to consider that some of us laypersons on this site could be considered experts, and put the lives of fellow BCO members in our hands.

Chart your own course. Dx at 30. Dx with mets at 38 while pregnant - extensive liver & bone involvement. Currently on Piqray, Faslodex, XGeva & COC Protocol. ER+/PR+, HER2 equivocal (IHC +2/FISH negative). Y90 liver radioembolization in 2018. Dx 9/2006, IDC, Right, 1cm, Stage IIB, Grade 3, 1/16 nodes, ER+/PR+, HER2- (FISH) Surgery 9/22/2006 Mastectomy: Left, Right Chemotherapy 11/5/2006 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 3/15/2007 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 12/2014, IDC, Stage IV, metastasized to bone/liver/other, Grade 3, ER+/PR-, HER2- Surgery 12/26/2014 Prophylactic ovary removal Hormonal Therapy 12/26/2014 Aromasin (exemestane), Faslodex (fulvestrant) Targeted Therapy 6/18/2015 Ibrance (palbociclib) Chemotherapy 3/10/2016 Xeloda (capecitabine) Hormonal Therapy 5/13/2017 Aromasin (exemestane) Targeted Therapy 5/13/2017 Afinitor (everolimus) Chemotherapy 8/17/2017 Abraxane (albumin-bound or nab-paclitaxel) Chemotherapy 3/22/2018 Doxil (doxorubicin) Chemotherapy 4/25/2019 Navelbine (vinorelbine) Hormonal Therapy 4/25/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Chemotherapy 11/26/2019 Gemzar (gemcitabine) Hormonal Therapy 8/24/2020 Faslodex (fulvestrant) Targeted Therapy 8/24/2020 Piqray (alpelisib)

Sep 28, 2017 03:54AM Traveltext wrote:

Good points JFL, but the Mods have already decided : "Based on the feedback from the large majority here in this thread regarding the "Mentor"/ "expert" idea, we will not take this idea any further at this current time."

However, advice is being handed out left, right and center here, already, and I wonder if this is much different legally. There are obviously many people here with as much knowledge about bc as many professionals, especially, say, a young specialist starting out. Sure this person is trained and legally indemnified, but may also make a wrong call on diagnosis or treatment. I'd suggest we all need to be our own advocates and check, check, and triple check everything along the way, either advicefrom the pros or from anything we might read here.


NED breast and prostate cancer. More on Male BC

Dx 03/14, IBC, Lgth. 2cm, Stge IIIB, Gde 2B, ER+/PR+, HER2- ; FEC x3, Taxol x3; Mx & 2/23 nodes; Rads x 33; now on tamoxofin.

Sep 28, 2017 09:50AM - edited Sep 28, 2017 09:52AM by ksusan

TT, I agree we should all double-check.

People offering opinions vs. people identified as experts seems to me to be legally different. Notice that when Mods respond to medical content, they tend to extend empathy and recommend a page on the main BCO site, rather than make a specific response to medical questions. As agents of BCO, their legal status is different from ours.

Mutant uprising quashed. Dx 1/2015, IDC, Right, Stage IIA, 1/1 nodes, ER+/PR+, HER2- Dx 1/2015, DCIS, Left, Stage 0, Grade 3, 0/2 nodes Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Lymph node removal: Sentinel; Mastectomy: Left, Right Radiation Therapy Whole-breast Chemotherapy Cytoxan (cyclophosphamide), Taxotere (docetaxel)

Sep 28, 2017 07:03PM Cowgirl13 wrote:

JFL, I couldn't agree more. Thank you for posting.

Be the kind of woman that when your feet hit the floor each morning the Devil says: 'Oh crap! She's up! Dx 5/28/2009, IDC, Left, 2cm, Stage IIA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ Surgery 6/17/2009 Chemotherapy 8/2/2009 Carboplatin (Paraplatin), Taxotere (docetaxel) Radiation Therapy 12/21/2009 Hormonal Therapy 2/22/2010 Arimidex (anastrozole)

Oct 6, 2017 08:49AM Moderators wrote:

Hey All,

Since we've decided not to move forward with this idea, we're going to lock the thread.

Thanks for all the constructive feedback.

Best,

The Mods

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