#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 

Dec. 11, 2019 Survey Results and Open Mic

What a nice way to end 2019, by sharing the results of our Community Survey followed by an Open Mic night. We were happy to have 17 participants. It was great to see some regulars and to welcome some new folks to the evening's chat. You may find additional analytics here. A complete transcript may be found on Symplur.

We shared five graphics showing some of the results of our survey.

Who responded to our 2019 survey?

How did participants interact with the community?

What was learned and used by survey participants?

 What were the most important topics covered in #gyncsm chats? 

How can #gyncsm do better? 

We then moved on to the Open Mic portion of the hour. We opened the floor for comments or questions from the community. Comments and responses may be found below. 

1. The difficulties women with ovarian cancer have getting into phase 3 clinical trials and recruiting minorities to clinical trials. 

• Clinical trials are tough as each one is so different and finding even the right contact person at each site is a challenge. @power4patients and others have good resource collections but still daunting
• You can find all the clinical trials open in the country on https://clinicaltrials.gov/  You can search under ovarian cancer. Or often times your local health networks will have them on their website.
• Is it based on location, I wonder, or other factors about age, stage, and treatment? I wonder if that will change when a PARBs more readily available earlier no matter what BRCA status?
• Women get frustrated by exclusion criteria too. Very disheartening for those who feel they’ve run out of options.
• Helping Cancer Patients Navigate #ClinicalTrials #gyncsm #ovariancancer Via ⁦@biospace⁩ https://www.biospace.com/article/helping-cancer-patients-navigate-clinical-trials/

2. It still seems that minority pops are overlooked in clinical trials, yet the data from these groups is crucial. Minority participation still stand at around 4%, well below the national averages. Why is this? 

• That's a great question. My cancer center just opened a Health Disparities center to try to understand and increase numbers of minorities who participate. As for why - I'll start with Language barriers, travel, child care,
• Black and Hispanic women are definitely under-accrued to clinical trials in ovarian cancer but this disparity is less pronounced in endometrial and cervical cancer
• That question has been explored quite a bit. There are a number of findings. The first is language barriers make it difficult to explain studies to nonEnglish speaking people. The second are cultural barriers formed by mistrust of The medical establishment.
• Those are some real issues, especially the issue of trust. But that places a lot of the ownership on the populations, not the industry. I'd include the fact that clinical trial orgs often use the old pipelines for trials & are not inclusive and they need to be.
• Enrollment of Racial Minorities in Clinical Trials: Old Problem Assumes New Urgency in the Age of Immunotherapy | American Society of Clinical Oncology Educational Book https://ascopubs.org/doi/full/10.1200/EDBK_100021#_i6

3. Surgery for Recurrence Ovarian Cancer Does Not Improve Survival    https://www.cancer.gov/news-events/cancer-currents-blog/2019/ovarian-cancer-surgery-recurrent-survival

• I’m still assuming that additional surgery is good for women who don’t respond well to chemo..?
• That's disheartening. I'll have to read it later. I wonder if that conclusion applies to all cell types and grades of ovca.

4. Research and ovarian cancer advocate @Stigetta was involved in this paper that just came out: A Priorities Assessment Tool to Support Shared Decision Making, Maximize Appointment Time, and Increase Patient Satisfaction in Women With Ovarian Cancer

https://ascopubs.org/doi/abs/10.1200/JOP.19.00455?utm_source=Email&utm_medium=Email&utm_campaign=JOP+ETOCs+9.4.19+Ongoing&email=865aa94a58f0b27b9edd2aa71d80e9a99b924971f7ce90316a0d742b2e9c9b1c&

5. Did you see this Nature article: Both fallopian tube & ovarian surface epithelium are cells-of-origin for HGSOC https://www.nature.com/articles/s41467-019-13116-2#Sec10

Please join us in January - one week later than usual - on Wednesday Jan 15, 2020 for our chat about “Goals of Care throughout the Cancer Experience” . 

Happy Holidays everyone! 

Dee

#gyncsm Co-founder 

Resource links shared, but not included above:

Coping with the holidays while in treatment for cancer - http://globeathon.com/blog/holidays-past/

Social Media Hashtags - https://www.sgo.org/social-media/social-media-hashtags/

Summaries of all #gyncsm chats - http://gyncsm.blogspot.com/p/chat-topics.html

Patient Empowerment Network Clinical Trial Resource Pages - https://powerfulpatients.org/hub/generalhealthinfo/general-health-information-treatment-clinicaltrials/

The generalizability of NCI-sponsored clinical trials accrual among women with gynecologic malignancies - https://www.gynecologiconcology-online.net/article/S0090-8258(16)31432-9/abstract

Why Are Uterine Cancer Rates Rising So Drastically in Black Women? - https://www.self.com/story/uterine-cancer-black-women

#gyncsm Survey results and Gyn Cancer Open Mic Chat - Dec 11,2019

We will end our chat year with a discussion of the results of the #gyncsm Community Survey we conducted in September and also allow our community to ask questions.

Some of the information we will provide about the survey is:

• Who responded to our survey?
• How did respondents interact in our community?
• What was learned and how was what was learned use?
• What were the most important chat topics we have discussed over the past few years?
• How can we have a better community? 

For the remainder of the chat hour we will hand the "mic" over to you to bring up topics of interest. This is our 4th "open mic" chat and we always enjoy the chance to bounce around where the topics take us. You may feel free to ask us about future #gyncsm chat topics (we are working on our 2020 schedule), about something you heard in the news that you found interesting or are curious about, about what questions others ask their nurse or doctor, or anything related to this community and the cancers that impact it. If we don't have an answer, we will happily research it for you and get back to you. We hope sharing your experiences and questions may help others in their experience.

We hope you can join us on Wednesday, December 11, 2019 at 9pm ET. 

See you then,

Dee 

Co-Founder #gyncsm 

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

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 

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.