Wednesday, August 7, 2013

#gyncsm - A Gynecologic Cancer Community on Twitter

In January this year I wrote a post titled "New Years Aspirations" for the SGO Blog page. The post  listed what I aspired to do in 2013. One of those aspirations was to help set up and participate in a regular tweet chat for gynecologic cancer survivors. I have taken part in a number of #bcsm (breast cancer social media) chats and thought it would be helpful to have a chat for women with gynecologic cancers.

In early July, I read an ASCO Connection article, "Hashtag Folksonomy for Cancer Communities on Twitter" by Matthew S. Katz, MD.  Dr Katz, who also participates in #bcsm, was thinking along the same lines I was in January. In the article, he speaks about developing a hashtag nomenclature for building online cancer communities and for sharing information and news. I recommend reading that article and the comments provided by advocates and health care professionals to learn more. You might also be interested in reading Hashtags:High Time or Half-baked.

Over the past few days I have been a part of an interesting conversation among a number individuals 
(      ) interested in developing a community for those diagnosed with gynecologic cancers.I am excited to announce that we are moving forward with a gynecologic cancer community on Twitter.  @btrfly12 has set up a twitter account for @gyncsm and the hashtag  #gyncsm ( gynecologic cancer social media) will be used for the online community of gynecologic cancers including cervical, endometrial, ovarian, primary peritoneal uterine, vulvar, and vaginal. There is still work to do regarding moderators, topics, date, time etc. so the start date for the Tweet chat is not yet finalized. If you are on Twitter be sure to follow @gyncsm for more information.  I will post additional information on this blog also.

Social media like Twitter is wonderful for sharing experiences, news and other information but there are drawbacks. Things posted on Twitter are public so there may be women who will refrain from participating due to a lack of privacy. Also a single tweet is 140 characters so at times it may be difficult to convey a complex topic but posting links may allow sharing of this type of information. I feel in the long run that the benefits will outweigh the negatives an I look forward to the first chat.

Every Day is a Blessing!


Matt Katz, MD said...

Thanks Dee for supporting the idea of a Twitter community for women with gynecologic cancer. It's only possible with committed patients and advocates. #bcsm has been fortunate to have a nice balance of support and empowerment and attracted a lot of clinicians. I think there's great potential for #gyncsm to do the same.

I agree on the point of privacy. Twitter is an open social network, so active participants are publicly sharing thoughts, health history etc. But it does provide an opportunity for 'lurking', listening in to the conversation - for some it may be enough to be helpful.

Maggie H. said...

Would you explain how Tweet Chat works? I am now posting automatically on Twitter my Facebook posts on my Helpkeepasisteralive page. I am not sure how to add a hashtag to those posts or if that would even be desirable for the type of "chat" you are trying to organize.
Best, Maggie

Dee said...


I think our future chats will work similar to the #bcsm chat.We are still working out the details.

You can always follow along by signing into twitter, search for #gyncsm and any tweet with that hashtag will show up in the feed. Just follow along. You just have to remember that if you want to tweet about the topic or reply you have to manually add in the #gyncsm to your tweet.
An easier way is to use something like tweetchat.
To participate open up the tweet chat site ( ) sign in ( with your twitter info) and the hashtag you want to follow. A new window will open and the tweet chat stream will appear. You reply, retweet and tweet right on this site. There are other sites to follow along too.

You may use the hashtag at times other than tweet time too if you want to share a tweet with the entire community.

We will schedule a chat for a specific day and time - for ex the 3rd Tuesday of the month at 9pm. Just log into twitter. We will ask those participating to introduce themselves ( type of cancer , location, etc). We may have a guest speaker or will ask up to 3 questions and have people respond.

Thanks for commenting now I'll be sure to write a post about how the process works when we get closer to chat time. I hope this helps.

Scott Simpson said...

Neat idea to have a global hashtag for this. I've set up a Hootsuite search so I'll have the latest in a column. Neat. Watch for me chiming in now and then @Simpson957.