The majority of survey respondents were Gynecologic Cancer Patient / Survivors (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%).
The patient / survivor breakdown was:
- 46.8% ovarian
- 34.3% endometrial/uterine
- 14.0% cervical
- 8% fallopian, primary peritoneal, vulvar or GTD
- 0% vaginal
- 7.8% breast
We were interested in how followers interacted with the #gyncsm hashtag, 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. Less than 10% of the respondents joined us on Smart Patients platform. When asked specifically about our blog site, we found that 50% of the respondents visited our blog.
We asked which of the topics covered over the past three years were most important and these were the top five topics for survey respondents:
- Survivorship
- Advocacy
- Side Effects
- Personalized Medicine
- Clinical Trials and 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.
When we asked how we can better help the community and what topics we should discuss, here's some of what we learned:
- Sometimes the time is either too early or too late.
- Sometimes the chat is too quick for a meaningful discussion.
- We should highlight other gyn cancers - endometrial/uterine, cervical were mentioned in particular. Continue to talk about clinical trials and genetics.
- Talk about health care disparities and outcomes for women of color.
- Talk about dealing with grief from the loss of friends.
- Talk about sexuality after treatment.
- Talk about what is important to younger patients.
We also asked respondents to share their thoughts on our #gyncsm chat/community and how it has has impacted their attitude toward their own health. Some of the things we heard are that #gyncsm provided:
- Hope.
- Made me feel part of the community.
- Encouraged me to take more ownership in my own preventive health and advocacy for others.
- Appreciate the range of resources offered.
- Feel more empowered, less alone.
- Led me to follow up more on some of my side effects and secondary challenges.
- Wish #gyncsm could be leveraged into a new non-profit for all GYN cancers.
- I felt like I was alone... there were no support groups near me. #gyncsm made me feel a part of a community.
- It is challenging for the hashtag to cover both advocacy/activism AND patient/survivor support - this is a common problem with other disease hashtags.
- There needs to be more equal support for other cancers.
Lastly we wanted to know how individuals find out about #gyncsm. Respondents found us via:
- Other cancer chats
- Dee's Blog
- From a friend
- Researching cancer
- Followed @btrfly12
- NED twitter handle
- Randomly found the #gyncsm chat
- Smart Patients
Thank you to all who took this survey and for your continued support. We are using the information from the survey as we make our plans for next year. Remember if you have any other comments or concerns feel free to reach out to gyncsm@gmail.com.
Dee
#gyncsm Co-founder
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