Voices: #gyncsm – A Growing Community

#gyncsm – A Growing Community | Dee Sparacio

In September 2013, I wrote about the establishment of the #gyncsm (gynecologic cancer social media) monthly tweet chat. Over the past year, #gyncsm discussed a variety of topics relevant to the gynecologic cancer community. During the hour-long online discussion we asked four to five questions on each month’s topic. At the conclusion of each chat, we posted the questions, a chat transcript and links to the resources mentioned during the chat on our blog (gyncm.blogspot.com).

This September, on our first anniversary, we welcomed the largest number of participants ever (57) to our discussion on “Advocating for Yourself and Others.” The chat topic that garnered the most impressions on Twitter (over 2.5 Million) was the June 2014 chat on Sexuality and Fertility. Roughly half of our chat participants are survivors (mostly ovarian cancer survivors) and the other half are health care providers.

In an effort to learn more about the needs of our participants (survivors, caregivers and health care providers) and to better tailor our future chats to those needs, we recently posted a 10-question survey online.

The five chat topics our participants found most important were:

  • Advocating for Yourself and Others
  • Ovarian Cancer Awareness
  • Clinical Trials
  • Fertility and Sexuality
  • Caregiver Family Issues

We then presented our ideas for chat topics for 2015 and asked our respondents to choose the most important ones. The top five topics were:

  • Dealing with Long- and Short-Term Side Effects
  • Personalized Medicine
  • Dealing with a Recurrence
  • Dealing with Anxiety
  • What I Wish I Knew before Treatment

In October we began a partnership with Smart Patients, an online community where patients and caregivers can learn about their disease, ask questions, and share information and experiences. This partnership will allow survivors and caregivers to join us in a private setting and use more than 140 characters to discuss our topics.

Our health care moderators and supporters Drs. Don S. Dizon (@drdonsdizon ), Merry-Jennifer Markham (@DrMarkham), Rick Boulay (@journeycancer) , Anne Becker-Shutte (@DrBeckerSchutte)   Matthew Katz (@subatomicdoc) and the SGO have made our chat a reliable source of information about gynecologic cancers. For me this chat is a dream fulfilled and would never have been possible without my co-founder and co-moderator Christina Lizaso (@btrfly12).

At the end of our chats we ask our participants to complete the phrase Today I Learned (TIL). This one is one of our favorites:

#gyncsm chat is a lifesaver. Its amazing to get opportunities to talk with fellow survivors & professionals freely. Thank you for this! @cookifit

I invite you to join us on Twitter the second Wednesday of the month at 9 pm EST by following the hashtag #gyncsm. Lurkers are always welcome.

Dee Sparacio (@womenofteal)