Greetings,
From time to time, we see posts regarding a product or an event for a variety of organizations and individuals. We often get mixed responses about these posts, both publicly and privately.
There is an existing rule that bans all marketing and solicitation. The text is here:
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No marketing or solicitation
You may not use Inspire for any form of marketing or solicitation. Ultimately moderators are the judges of what constitutes marketing or solicitation. Like other things, we know it when we see it. Specific examples include, but are not limited to: promoting a product, service, company, person, miracle cure, Web site or online support group; soliciting donations for charitable causes or yourself; presenting your resume and/or asking for work; selling Viagra (we have plenty, thanks).
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Up until now, our criteria for including or excluding a post has been a bit subjective, and not consistent with this rule. As long as the post is from someone or some entity that LCA knows and collaborates with and it is lung cancer specific, we felt comfortable keeping it. Sometimes community members agree with us, and sometimes they don’t.
We never take these decisions lightly. But as a result of strong feedback we’ve gotten over time and comments regarding recent posts advertising for products and events, we have made the decision that we will no longer be allowing any post that advertises a product or event, regardless of who it’s coming from. This includes us at LCA.
We at LCA are in full support of all event and product posts that have been on the community in the past. We also want to be sure everyone has easy access to a place to promote and learn about events being sponsored by all lung cancer organizations, not just LCA. LCA has always had a place on our organization website where events are constantly being posted, for ALL lung cancer organizations. If you have an event that you would like to advertise or if you would like to find an event, please click on the following link: http://www.lungcanceralliance.org/news/events.html . We will also have this link permanently on the right side of this page.
All event and product posts prior to now will be maintained on the community. However, in the future, posts on the community related to products, events and fundraising will be deleted. We understand that many members will be disappointed by this decision, but having weighed the feedback that we have received, we feel this is the best option for us at this time.
Thank you for understanding.
Amy
LCA
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New Decision regarding posting events and products
Explore topics in this discussion:
51 replies
- Oldest first
- Newest first
- By amymaura
- Posted March 27, 2009 at 9:53 am
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Hi Julia,
The link to the right was not always there on the right, but it has always been on the LCA website. We put it there when we decided that we were going to start enforcing the rule because we felt it was necessary to have a place for people to post awareness raising and fundraising events.
It's all about context. This community is to swap tips on what helped you or your loved one through lung cancer. If a product such as a cream or shampoo helped you to deal with a side effect, great. Post it. Don't post the link, but post the full name of the product so someone can talk to their doctor or pharmacist about it or look for it if it suits them.
Post the scientific breakthroughs and the links to the articles discussing them. That's not marketing or solicitation. That's information.
As for the fundraising/awareness raising events, those will not longer be allowed on this site, which is why we opened up the link on the right. So if the Mass. chapter of LCA is having an event, it cannot be posted here. It CAN however be posted on the LCA events page. And the link is there so that anyone who wants to see where events are going on can click and read whenever they want to. In a way, if you think about it, this helps for events to not get lost amidst the posts on this website. It's a streamlined place for them to be "held" and always available and visible until the event has been held.
Hope that clarifies.
And to everyone, I will not be answering anymore questions about this online, but please feel free to email me at apearson@lungcanceralliance.org if you need more clarification about this.
Thanks,
Amy
LCA
- By Chi-Dreamer
- Posted March 27, 2009 at 10:10 am
- Report post
Sounds pretty simple to me. We can still chat about our trial and tribulations, what works or didn't work and check the link on the right for events and fund raisers.
I think this discussion has run it's course.
PS. Had 2nd treatment yesterday of PDX (trial drug) first CT follow up will be end of April. Also met a fellow poster on this site who also goes to Northwestern. So great to meet someone face to face.
Wishing everyone a Great Day!
Linda
- By jgaynor711
- Posted March 27, 2009 at 10:14 am
- Report post
Thanks for clarifying, Amy. That helps. I'll post any event or advocacy info to that other events section.
Julia
- By TeamInspire
- Posted March 27, 2009 at 10:51 am
- Report post
Lee,
Inspire is upfront about all the things you mention. All of our guidelines, principles, privacy policy, terms of use and other helpful links are at the bottom of every page for easy access.
Also, note that we do not automatically remove posts about alternative treatments, when they are obvious promotions or ads, we do. There have been several discussions here about alternative treatments that continue to go on.
Hope this helps clarify.
Beth, TeamInspire
- By Joyner4u
- Posted March 30, 2009 at 2:01 am
- Report post
You should never take away our learning tools,such as we find ,( OR FOUND ) ON THIS GREAT SITE. iF IT HAPPENS ALL I CAN SAY IS THAT IT WAS NICE WHILE IT LASTED.I WILL BE LOOKING FOR ANOTHER SITE. I SPENT ALOT OF TIME PROMOTING THIS SITE BUT ALL FOR NOT.Sey,a,nora..Jack Joyner
- By Munker
- Posted March 30, 2009 at 11:07 am
- Report post
I'm with joyner4u. I think this is censorhsip. My god, so there is a company that is going to make money on a nailpolish but at the same time create awareness about LC. We should jump on it. No matter what retail store you go in to there is PINK represented and I am certain lots of companies have gotten rich but who cares as long as our cause gets out there to as many people as possible. Folks still don't know the ugly facts about Lung cancer and it is imperative that we use whatever vehicle necessary to get the word out. I posted the information on Facebook and have already received numerous emails from people that did not know the stats on Lung cancer and who are going to spread the word to family and friends. Everyone has the freedom to make choices wheter it is hitting the delete button or making decisions regarding treatment but we don't need big brother telling us what is/is not acceptable - that is what I find offensive.
- By Toddy
- Posted March 30, 2009 at 12:01 pm
- Report post
Speaking just for myself, I don't think enforcing a standing rule is about censorship, it's about a clearly marked (sponsored message board) having rules in place by that sponsor, Lung Cancer Alliance. To the best of my knowledge the rules have always been in place and available for anyone who wants them. They were in place in 2006 when I joined. The fact is that LCA maintains and supports this site as a service to those who want to use it along with help and technical support from team inspire, it's not something they have to do.
There are other LC boards, many of us visit several, most have guidelines and moderators too. It would be sad to see people leave over this, I for one don't want this site to go away and I understand that it's here for all of us at the behest of LCA.
- By Bette_Tx
- Posted March 30, 2009 at 1:44 pm
- Report post
Thank you very much for this new decision. One suggested 'we' should be the one to make the decision to decide what is a solicitation or marketing product and/or snake oil treatment.
That might work fine for some of us veterans who've been here a few years. But for a newbie to lung cancer who comes here, scared to death, and hoping for an immediate cure, those type of posts could be dangerous. Also this website is free to all of us and should not be used to promote the selling of a product from another website.
Thanks for all the LCA does for us.
Bette
- By rmhayes
- Posted March 31, 2009 at 12:48 pm
- Report post
You might be interested to know everyone that the person who was advertising so diligently to contact so and so....is gone. This person joined and with the first post to the lst post it was all bout you should try this. Person had a "story" but never asked questions...just replied with the "ad" and the link. Those were the posts that bothered me the most.
robin
- By bluestar30
- Posted March 31, 2009 at 11:00 pm
- Report post
I am not sure what all the fuss is about. I come to this site to learn everything I could about LC, and wish I had it while my dad was still around. When my mom got sick, I struggled again trying to learn about her cancer...and found this site when it was too late.
It takes a very long time to figure out what's going on when your loved ones get sick. The doctors don't tell you very much, and they can often waste your time. It is impossible to figure out things on the web without significant time investment, and I found myself taking care of my folks all day long, and then up all night trying to figure things out. As I said, I wish I would have had this site while I was going through the worst nightmare of my life in losing my parents. I would have loved being able to offer more information.
I have always been of the mind that people are smart enough to figure out what is junk and what is not...I am not a huge fan of too many rules...Cancer is bigger than all of us. Trying to manage people who are scared, who are looking for information, comfort, meaning seems almost as hard as managing cancer itself. Why not just let the site take on a life of it's own...so far I have never seen anything that annoys me...except new rules. Don't you just hate rules? I thought there was a rule that my parents would never die young...and look how that went.
To all of you, a sweet night, there will be a cure sooner than later. And for all of those who feel sick tonight, there is tomorrow, and that's where hope lives for all of us.
BTW, yesterday was my birthday, my first one without my parents, it felt as if I lost them all over again.
Chris
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Sorry, this discussion is closed to replies.
I have to admit, I'm pretty confused about this rule now, not less. I might be dense, but please can you help clarify?
So it's ok to post about different treatments, supplements or shampoos or even nail polishes that might financially benefit a corporation as a result of us purchasing them - as long as we don't include a link to the website?
What if we read about some scientific breakthrough in a news item or a new clinical trial? Can we mention that and include a link? For instance, i read an article yesterday about how the woman Obama appointed to lead health care reform lost her mother to lung cancer. Info like that gives me hope and I was going to share it with the community. Would I be able to, and with a link to the article?
And does this apply for awareness building events or fundraisers as well? So, for instance, if our local Massachusetts chapter of LCA was gearing up to start planning our annual candlelight vigil (which we are) and wanted to let any local folks know that they could be part of the planning efforts, could I mention that here - and just ask people to contact me via email or this site? Or if I was planning a local 5K run to support lung cancer and wanted to see if anyone wanted to help organize it, could I mention that here? I would never actually solicit for donations on this site, but I would love to let people know about local advocacy opportunities.
Until you mentioned the "events" link to the right, I'd honestly never noticed it before, so while you are providing the forum, it's not as prominent as this discussion group, and in that sense, it's much less effective.
And yes, I know LCA does a lot of grassroots advocacy work. I'm one of your grassroots advocates!
:)
I'd love to have that info clarified. Thanks!
Julia