Looking Back, Looking Forward Chat - December 14, 2022

We invite you to join the #gyncsm community as we close out our 2022 chat series. On December 14th our topic will be Looking Back, Looking Forward - a chat topic we have not covered since December 2015. We will use our one-hour time slot to reflect back on 2022 and share our goals heading into 2023 - for ourselves, for gyn cancer advocacy, and for the #gyncsm community. We continue to monitor and assess our Twitter-based Community under the new ownership of Twitter and will include that in our discussion. Here's our six Topic questions:

T1: What are some things you did in 2022 that brought you satisfaction? What steps have improved your overall quality of life?
T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2023?

T3: What are some of the "wins" for gynecologic cancer advocacy/treatment/care over the past year or so? Where are we seeing progress?
T4: What are some areas within the gynecologic cancer space that you want to see more progress made over the next year? Any projects/action steps you already have planned?

T5: What are some of the things you appreciate about the #gyncsm community being on Twitter? What do you find helpful about #gyncsm?
T6: What are your plans for staying or leaving Twitter? Which other platforms have you tried or are you considering? Any thoughts on the future of #gyncsm and what you'd like to see?

We hope you can join us at 8pm ET on Wednesday, December 14th and share your thoughts. 

Interested in what might come next for #GYNCSM post-Twitter? Join the #gyncsm mailing list: HERE

Dee and Christina 

#gyncsm Co-founders

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 

Gynecologic Cancer Advocacy & #gyncsm Community Goals - September 2016 Chat

It is Gyn Cancer Awareness Month! What better time to chat about Gynecologic Cancer Advocacy than September. Christina and I are also excited to celebrate #gyncsm's 3rd Anniversary as a chat and a Twitter community. Over the past three years we hope #gyncsm has provided patients, survivors and caregivers of women impacted by gynecologic cancer a place to gain valuable information about gyn cancers, available treatments and emotional support. For the healthcare providers and researchers we have welcomed, we hope #gyncsm has provided insight into the experiences of those impacted by gynecologic cancer. We will wrap up this month's chat speaking with you - our #gyncsm community members - about our goals.

We hope you will join us as we delve into these topic questions:

T1a: What skills have you gained in learning to advocate for yourself / loved ones / patients?

T1b: Being your own best advocate when it comes to your health isn't always easy. What are some tips and resources?

T2a: What groups/organizations are you involved w/ that advocate and raise awareness for women's cancer? 

T2b: How will you be advocating for yourself and others this month? Share as well any events/campaigns others can join.

T3: For gynecologic cancers, what are the barriers in raising awareness? 

In advocating for improvements in care?

T4a: In the past 3 yrs, have you seen changes/progress in GYN cancer awareness, treatment and advocacy? 

T4b: What issues do you think it's important for the #gyncsm community to advocate around?

T5: What can we do to better fulfill [#gyncsm's] mission? How can we bring more gyn cancer survivors into our community? 

Another exciting part of this month's chat will be the launch of our 2nd Community Survey.

This short 10-question survey will launch on the day of our chat, September 14, 2016 and will end on October 11, 2016. We hope to learn more about our members, your background, topics of interest to you, and what we can do to improve your experience and our #gyncsm community.

So be sure to join us on Wednesday, September 14, 2016 at 9pm ET (for your local time click here).

See you then,

Dee
Co-founder #gyncsm

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