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