#gyncsm Survey 2024 Results Are In!

While the number of responses to this year's #gyncsm Survey was not as high as in 2019 (11 vs. 33),  Christina and I wanted to summarize the results and share them with the community. 

Of the eleven responses, the majority were gyn cancer patients, followed by caregivers, healthcare providers, a previvor, and cancer researcher. When asked what cancer diagnosis a patient/survivor/caregiver was dealing with the majority (6) were ovarian cancer, with one with endometrial cancer, one with vaginal cancer and one other cancer. Those who responded in the health care field represented cancer researchers, a therapist, a nurse and two in the other category. 

When asked how they found the #gyncsm chat and community, most responded that they stumbled upon it on X/Twitter while one responded they joined us from the Inspire(/OCRA) community. The eleven respondents participated in our community in the following ways: 

When asked if they visited our blog in the past year the majority of respondents read the blog post before or after the chat while others visited it to check the resources. Forty-five percent did not know we had a website/blog. 

When asked about the most important topics that we have covered in the past two years, Advocacy and Survivorship were the most popular topics while there were no choices for urogynecology . 

When asked how they used what they learned in our chats the majority shared that they advocated for themselves or their loved one, followed by recommending or using the resources we provided. The results for this question were similar to results from our 2019 community survey (see: 2020 ASCO Annual meeting survey results abstract https://meetings.asco.org/abstracts-presentations/187383). 

Suggested topic ideas for the future included:

• Finding clinical trials in your area 
• Cancer induced infertility
• PTSD and fear of recurrence
• Long term survivorship - is it Luck?
• How close are we to a screening test 
• Staging of disease - should it be revised
• Mental health 

Respondents preferred quarterly meetings at 8pm on the second Wednesday of the month.  Three respondents would like to see the #gyncsm community on Facebook. 

Thank you so much to all the survey participants for taking part in this survey and for everyone's continued support and use of the #gyncsm hashtag.  

See you in December when we chat about cervical cancer. 

Dee and Christina 

Co-moderators of the #gyncsm 

No #gyncsm Chat on June 12, 2019

See you in July when we chat about Maintenance Therapies for Gyn Cancers. 

Dee

#gyncsm Co-founder

Our Community - 2016 Survey Results

During September and early October we conducted a #gyncsm community survey. We were so pleased that 84 individuals took our survey. This is up from 37 respondents who completed our 2014 #gyncsm survey. We very much appreciate those who took the time to share their ideas and recommendations. Below are some highlights of the results.
 
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

Of the health care professionals who filled out the survey, the majority were nurses (42.8%) or gynecologic oncologists (28.5%). The remaining health care professionals were medical oncologists, radiation oncologists, researchers or genetic counselors.
 
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:

1. Survivorship
2. Advocacy
3. Side Effects
4. Personalized Medicine
5. 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.

But we also heard:

• 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:

• Twitter
• Other cancer chats
• Facebook
• 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

Celebrating Cancer Hashtag Communities and a Moonshot

The #gyncsm community is pleased to be joining in the activities celebrating our cancer hashtag communities and the Moonshot Program. Many representatives of our hashtag communities have been invited to the Moonshot Summit in Washington, DC or one of the Regional Satellite Summits. We invite everyone in the gynecologic cancer community to join with survivors, advocates, researchers and others for one of the chats listed or to submit an idea to the Moonshot Program (link provided below). 

This coming week, the online cancer hashtag communities will be celebrating. Why, you ask? We have two good reasons.

1. The Cancer Moonshot Summit happens Wednesday, June 29, in DC and in satellite locations all over the US (see DC agenda at bottom of this post). While several of our members will be attending, we all have the opportunity to provide input to the Cancer Moonshot (deadline July 1).
2. The 5^th Anniversary of the beginning of Breast Cancer Social Media (#BCSM) and the beginning of cancer hashtag communities on the web happens July 4!

Our celebration will take the form of several coordinated chats open to everyone, regardless of cancer type.

Mon 6/27: #BCSM Chat (use both #BCSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about three of the Cancer Moonshot Working Group topics (check blog on #BCSM website for chat details):
--Expanding Clinical Trials
--Enhanced Data Sharing
--Precision Prevention and Early Detection
Ideas generated can be submitted online to the Cancer Moonshot.

Wed 6/29: Cancer Moonshot events in DC and satellite locations (see agenda for DC Summit below)

Wed 6/29: #Hcchat will conduct the official Moonshot chat on Twitter (use both #Hcchat and #Moonshot hashtags) at noon Eastern Time on the topic "Will the Moonshot lead to the death of cancer?" This chat applies to all types of cancers. Special guest will be Vincent T. DeVita, Jr, MD, who was head of the NCI during Nixon's Cancer Act and author of "The Death of Cancer."

Thu 6/30: #LCSM Chat (use both #LCSM and #cancerchat hashtags) will host a cross-cancer chat at 8 PM Eastern Time about the remaining four Cancer Moonshot Working Group topics (check blog on #LCSM Chat website for chat details):
--Cancer Immunology and Prevention
--Tumor Evolution and Progression
--Implementation Sciences
--Pediatric Cancer Ideas generated can be submitted online to the Cancer Moonshot.

Thu 6/30: Last day to submit Moonshot ideas at https://cancerresearchideas.cancer.gov/a/index

Sun 7/03: #BTSM Chat (use both #BTSM and #cancerchat hashtags) will host a cross-cancer chat at 9 PM Eastern Time about our hopes and dreams for cancer research and treatment in the future.

Mon 7/04: 5^th anniversary of #BCSM and cancer hashtag communities

Mon 7/04: #BCSM anniversary celebration chat at 9 PM Eastern (use both #BCSM and #cancerchat hashtags)

The cancer hashtag communities hope you"ll join us for some (or ALL) of these special events and help us celebrate! To learn more about the cancer hashtag communities, visit http://www.symplur.com/healthcare-hashtags/ontology/cancer/



  AGENDA FOR THE CANCER MOONSHOT SUMMIT IN WASHINGTON, DC


















Original blog post appeared on lcsmchat.org site. 


Dee and Christina
Co-founder's #gyncsm Chat (est. 2013)

#LCSM chat 8/27 8pm ET: Let's get social... in our health?

Christina and I are pleased to be joining the #lcsm community to discuss "Getting Social with your Health"  on Thursday August 27, 2015 at 8pm ET. Below is the guest post Christina wrote about the chat for the #LCSM Chat Website. 

The internet has obviously changed a lot of things. One of the most exciting and impactful changes for me has been how it enables patients to find each other and form disease communities. It began with discussion boards; now there are an amazing number of options to suit various interests, styles and comfort levels. The rise of online patient communities has been especially important for those with rare disease and diseases which carry stigma.

What is really exciting is to see patient communities go beyond internally supporting one another and reach out to make a bigger impact — with their data, in cross-disease advocacy and information sharing, and in working directly with doctors, healthcare workers, researchers, pharma and health IT professionals.

I’m definitely an admirer of the #LCSM community, which was formed and launched just prior to Dee Sparacio (@womenofteal) and I forming the #gyncsm community for gynecologic cancers. The #LCSM community has a great focus on turning ideas into action, pushing for collaboration, and is not afraid to get technical.

Guiding our discussion for the Thursday, August 27th #LCSM Chat at 8 PM (Eastern Time) will be:

T1: What are the benefits to patients and loved ones in connecting and sharing on social media? Why do you participate?

T2: What are your tips for getting started in using healthcare social media to connect and learn about a condition?

T3: What are some considerations and cautions when it comes to getting social with your health?

T4: How do we bring more people into the important discussions happening in digital health communities like #LCSM?

The #LCSM community is vibrant and welcoming. It is the perfect setting to check out getting social with your health – no matter your health background. I hope you’ll join us for a great discussion. Dee and I are honored and excited to participate.

For a primer on how to join #LCSM chat, check out How to Participate in LCSM Chat. You can also check out the #gyncsm community disclosure statement on participating in healthcare social media.


Christina Lizaso (@btrfly12)
Co-Founder and Co-Moderator #gyncsm community
Moderator #patientchat

Further Reading:

• The Nature of Online Communities – #HCLDR (Healthcare Leadership) Blog
• Communicating the experience of illness in the digital age by Susannah Fox
• MedX Panel – Communicating the experience of illness in the digital age (video, notes & tweets)
• Power of twitter chats in in their ability to build community
• How to Be a Twitter Chat Champion via @np_blogexchange

We hope you can join us!

Dee 

Co-Founder and Co-Moderator #gyncsm Community

Topic Questions For Our November Chat

Wednesday's (November 12, 2014 at 9pm EST) #gyncsm chat topic will be "Complementary and Alternative Therapies".

Below are the questions that we will be asking during the chat. We will share helpful resources from the NCI, NIH and NCCAM as well as welcome Lynne Feldman, author of Integral Healing and Meg McQuarrie, founder of the  Elixir Fund to our chat. 

T1: Are you familiar with complimentary therapies? How do patients hear about? Which have you tried?

T2: Which complementary therapies from your viewpoint seem to be most helpful? Ones to avoid/delay under certain circumstances?

T3A: If you looked into or pursued alternative therapy, pls share your decision process, experience, outcomes.
T3B: What are the provider thoughts when it comes to alternative therapies?

T4: What guidelines/considerations can help patients explore options? Certain therapies providers would feel uncomfortable with? 

We look forward to you joining us.

Dee

We Asked & You Answered

Thank you to everyone who completed our survey. Thirty-seven people from survivors to researchers to gynecologic oncologists completed the survey. Please note, you could skip questions so not all questions were answered by all 37 people.

The number of respondents who were patients or survivors was 54% which is similar to the percentage of patients / survivors who participate in the monthly chat. We also heard from caregivers (2.7%) , and advocates ( 10%) . Twenty-four percent of the respondents were healthcare providers and five percent were cancer researchers. We did have a few individuals who were survivors / caregivers of other cancers who also took the survey.

Of the patients / survivors who took part in the survey, a majority of them had been diagnosed with ovarian cancer while we had three cervical cancer patients and three endometrial cancer patients complete the survey.

Health care providers who filled out the survey were predominantly gynecologic oncologists, radiation oncologists, and nurses but we also had one peer-to-peer support person and a health reporter participate.

When we asked you why you took part in the chat, we learned that many of you joined us to learn and because the topics were interesting. You also joined us to meet other community members, to provide support and to share advice. A number of the respondents joined us to share knowledge to improve the quality of care of women diagnosed with these diseases.

We asked you which topics (Sept 2013 -2014) you found most important. Based on the average rating the top 5 topics were:

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

Then we provided a list of topics for 2015 and asked you which ones you felt were most important. The top 5 topics are:

• 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 the next question we provided some areas in which you could use what you learned in the chat. Many people used or shared the resources mentioned in the chat or on our blog, advocated for yourself and others, and made changes in your personal or professional practice.

When we asked you how we could improve the community, you told us to

promote our blog more and to increase how many patients participate in the chat. One person suggested we reach out to cancer centers to post about the chat. You also asked for the questions in advanced so you could be bettered prepared. We started doing that for the October chat and will continue to do so.

We asked you how often you participated in our chat. Ten of you had not participated in the chat at all. Seventeen respondents took part 1-5 times and 6 took part between 6 and 13 times.

We saw similar results when we asked you how frequently you visited our blog, with eight people having never visited the blog. Fourteen visited from 1-6 times. And five people reported that they visited the blog 10+ times.

Some other important things shared:

You were happy that your non-professional voice was heard.

You asked to have a spot in a blog to share your blogs. (We do have links to resources and the major gyn cancer organizations on our blog. )

Some were a bit uncomfortable in the company of physicians. (We hope our new partnership with Smart Patients will allow you to feel better connecting with your peers. Be sure to register at https://www.smartpatients.com/gyncsm to continue discussing our chat topics.)

We also heard from one person that we provided “fuzzy” information. We apologize if we are not communicating in the best way for you to understand the information. Please contact us via e-mail ( gyncsm@gmail.com ) with any issues you may have.

We appreciate the feedback you have provided and will use it to plan our 2015 chat topic list and as a guide as we grow our community.

Thank you!

Christina Lizaso

Dee Sparacio

#gyncsm Co-moderators 

Topic Questions for our Oct 8th Chat

Wednesday's ( October 8, 2014 at 9pm EST) #gyncsm chat topic will be "Recurrence- What Now?".

Here are the questions that we will be asking during the chat. You will see that some questions are addressed to health care providers and some are directed toward those dealing with a gyn cancer diagnosis and their caregivers. 

T1A: What are the signs of recurrence for the main GYN cancer types & how is recurrence confirmed? 

T1B: If you had a recurrence, what signs/ symptoms did you have? Please include in answer which gyn cancer you had.

T2A: How likely is a GYN cancer recurrence and where might the recurrence occur?

T2B: If you had a recurrence, where did your recurrence occur? Please share cancer type in your tweet.

T3A: What treatments might be offered for a recurrence? Different than first-line?

T3B: Survivors: What factors did U consider when choosing a treatment 4 recurrence? Did U consider #clinicaltrials? join trial?

T3C: From the provider perspective, what factors do you feel patients should consider? How do clinical trials fit in?

T4A: What tips & resources can help patients and families cope w/ the emotional impact of a recurrence? also the fear of recurrence?

T4B: If you had a recurrence, what did you find helpful? Survivors, what helps you cope with fear of recurrence?

We have some exciting news to share with all of you on Wednesday or check this blog on Monday for our announcement. 

See you Wednesday night!

Dee

Co-moderator

Help Us Plan- The Gyncsm Survey

Last month Christina and I had a Google Hangout. I live in NJ and she lives in Texas. So for the past year we have been communicating strictly via e-mail.  This was the first time we talked face to face since we founded the #gyncsm chat.

We talked about celebrating the community's one year anniversary and what we could do to enhance the community experience ( more about that in October). We also discussed who participates in the monthly chat and how to increase the number of  @gyncsm followers who participate in the chat. As we began generating a list of topics to cover during our  2015 #gyncsm chats we realized that we should ask our participants what topics were important to them in 2014, what topics they liked best from 2014 and how they used the information they learned by taking part in our chats.

So over the next few weeks we developed the questions and asked our health care moderators for their input regarding which questions to use in the final 10 question survey.

During our September 10th chat Christina tweeted an invitation to fill out the survey. Twenty-two people to date have completed the survey. Thank You!

If you haven't completed the survey, please take the time today to go to the link below

https://www.surveymonkey.com/s/5QNDJ7K 

and answer the questions. The survey is open to all- healthcare providers, caregivers, patients, survivors, researchers.  We are listening and your input is valuable to us as we plan future chats. Thanks again.


See you on October 8th ( 9pm EST) for our chat on Recurrence.

Dee
Co-moderator.