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#gyncsm Community – Participants Are Key

by Dee Sparacio

 

In 2015, I wrote an article for Cancer Knowledge Network about the founding of the #gyncsm Community in 2013. (https://cancerkn.com/a-twitter-community-for-those-impacted-by-gynecologic-cancer-is-born-and-grows/). #Gyncsm is a Twitter community for those impacted by gynecologic cancers – gynecologic cancer survivors, patient advocates, caregivers, researchers and health care providers. As we look forward to 2018, the community continues to grow and find ways to collaborate.

 

When we founded the #gyncsm community in 2013, Christina Lizaso (@btrfly12) and I (@womenofteal) were pleased to have Rick Boulay, MD (@journeycancer), Don Dizon, MD (@drdonsdizon),  MJ Markham, MD (@DrMarkham ), Matthew Katz,  MD, (@subatomicdoc) and Dr. Ann Becker-Schutte (@DrBeckerSchutte) join us in this endeavor. Due to other professional commitments, Dr. Dizon left his role as a monthly chat moderator in 2015 but along with Tamika Felder, OCRFA, SGO and Foundation for Women’s Cancer he continues to provide support to our community. We were pleased to have Shannon Westin, MD (@ShannonWestin) join us as our new monthly chat moderator in December of 2015.

 

In 2016, we had an average of 38 participants take part in our chats. Impressions during our 2016 chats averaged over 2.1 million while our average tweets per hour was 438.  In October 2017, fifty-one participants took part in our chat on #clinicaltrials – How Have They Changed.  ( Data provided by Symplur.com).

 

By sharing information during our chats, on our website, and with tweets, our community has taken part in a number of awareness activities – Globethon to End Women’s Cancers, World Ovarian Cancer Day, #Dazzle4Rare Rare Disease Campaign and International Women’s Day, along with  Gynecologic Cancer Awareness Month each September. In 2017, working with the Foundation for Women’s Cancer and SGO, we also promoted the use of the hashtag #Trials4GynCancerNow. We used this hashtag to help raise awareness for the need to increase funding for gynecologic cancer clinical trials.  We highlighted how the number of phase 3 clinical trials available for women with gynecologic cancers has dropped 90% since 2012.

 

During the past few years, we have held joint chats with other Twitter communities.  During the joint chat, Young Adults: Life Following a Cancer Diagnosiswith the Metastatic and Young Adult Cancer Community (#mayacc) we discussed the experience of surgical menopause, the need to discuss  fertility preservation and the unique aspects of being a young cancer survivor. Christina and I also joined the Lung Cancer Social Media community (#lcsm) during their chat on Getting Social With Your Health. We discussed the benefits of learning about your condition online as well as the support online communities can provide.

 

We have welcomed a number of special guests to our monthly chat.  During our Genetic Counselors and Understanding Gynecologic Cancer Risk chat we welcomed the National Society of Genetic Counselors (@GeneticCouns) members who shared their knowledge about who should have genetic testing, mutations that cause an increased risk for gynecologic cancers and how people can access genetics counselors. When our topic was Radiation Oncology – What is it? When is it used?, we were joined by Dr. Matthew Katz (@subatomicdoc) who shared which radiation treatments are used for gynecologic cancers and the side effects of pelvic radiation. During#clinicaltrials – How Have They Changed, ASCO (@ASCO) representatives joined us to discuss how clinical trial design has changed in the past few years. They also explained important aspects of the TAPUR (Targeted Agent and Profiling Utilization Registry Study) trial, patient reported outcomes and the pros and cons of being part of a clinical trial. Be sure to check our Chat Topics (http://gyncsm.blogspot.com/p/chat-topics.html) page to learn more about other chat topics.

 

During September 2016 we conducted a #gyncsm community survey. We had 84 individuals take our survey (an increase of 44% from our 2014 survey). The majority of survey respondents were gynecologic cancer patient/survivor (70.0%) followed by high risk individual or advocate / previvor (12.5%), health care provider (11.25%), caregiver/loved one of a gynecologic cancer patient/survivor (10%) and lastly cancer researcher (5%).

 

In the survey, we asked how our followers interacted with the #gyncsm hashtag, and participated in our chats and community. 43% of the respondents read the chat blog posts, 43% retweeted using the hashtag, 36% took part in a chat, 38% tweeted using #gyncsm, and 27% read a chat transcript. When asked which chat topics were the most important respondents chose: 1) Survivorship, 2) Advocacy, 3) Side Effects, 4) Personalized Medicine, 5) Clinical Trials and 6) Support. When asked how they used the information from #gyncsm chats after the chat, the top response was advocating for themselves or others (58%). Also of note, 29% took part in an online support group and used a resource found in our blog posts.

 

This September we celebrated our 4th anniversary. We are busy planning our 2018 chat topics list, which includes immunotherapy, cancer pain, careers, value of care and physician-patient communication. Be sure to follow #gyncsm on Twitter for the latest information on gynecologic cancer screening, research and treatments. We invite you to  join us on the second Wednesday of the month at 9pm ET and follow breaking news about gynecologic cancers.

 

We knew back in 2013 that there was a need for a community focused on the needs and experiences of gynecologic cancer patients and survivors. We are pleased that we have continued to be a conduit for important research information as well as emotional support.

 

 


 

Dorinda (Dee) Sparacio worked as an engineer and teacher prior to being diagnosed with Stage 3 ovarian cancer (OC) in 2005.  Encouraged by her gynecologic oncologist, she attended the LiveSTRONG Survivor’s Summit and launched her vocation as an OC research advocate.  She shares her story and information about OC and cancer research on Twitter as well as on her blog, Women Of Teal.  In 2013, she co-founded the #gyncsm community for those whose lives have been impacted by a gynecologic cancer. She has been the patient representative on two ASCO clinical guideline panels. In 2016, she co-authored the book 100 Questions and Answers about Ovarian Cancer with Dr. Don S. Dizon. “My efforts to raise awareness and increase the funding of ovarian cancer research are dedicated to the women whose lives have been taken by ovarian cancer.”

 


 

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