Wednesday, September 14, 2016

September 14, 2016 Chat - Gynecologic Cancer Advocacy & #gyncsm Community Goals

Today we celebrated our third anniversary as a chat and Twitter cancer community.

We want to take this opportunity to thank this year's health care moderators, Dr. Rick Boulay, Dr. Shannon Westin, Dr. Merry Markham and Dr. Anne Becker-Schutte. We also want to thank one of our founding health care moderators, Dr. Don S Dizon and Dr. Matthew Katz who wrote our Tweet Disclaimer. And to all the organizations and individuals who supported us by sharing our tweets and information about our chat, thank you.

Since September is Gynecologic Cancer Awareness month it was fitting that our chat topic was Gynecologic Cancer Advocacy and #gyncsm goals. We had 34 participants join us for our chat and had over 1.5 million impressions. Additional analytics may be found here.

The questions we used to guide our discussion appear below with some sample responses. Please see our transcript here for the complete responses and the names of additional advocacy organizations.

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

  • Using social media as a way of promoting awareness. Advising women to journal their symptoms.
  • Still working on speaking up for myself when I'm in the doctor's office. A work in progress. I do fine speaking up re: my kids
  • Have learned importance of going into appts prepared as much as possible.  

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

  • Picking up new words quickly. If in person, asking what they mean, how they are spelled, etc., helps me learn.
  • If possible, bring a buddy. A second set of ears, voice for clarification, note-taker, etc can make a huge difference
  • Society for Participatory Medicine @s4pm is a great group. Talking w/ other patients. @intakeme has ePatient101 online course 
  • @power4patients another good resource. @smart_patients community and other communities

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.

  • wearing my teal ribbon bracelet all month and starting conversations, wearing teal on tuesdays, RTs and posts on my personal FB
  • Just gave a lecture to our ovarian cancer survivor group, keeping teal on whenever possible, bringing up gyn cancer on twitter!
  • Just completed a documentary with PBS "Close to Home: cancer survivorship" airs next week on PBS 39. 

T3: For gynecologic cancers, what are the barriers in raising awareness? 
In advocating for improvements in care?

  • All rare diseases are tough to shine the light on
  • Women can be afraid to discuss gynecologic cancers - it can be an uncomfortable topic - they feel alone 
  • Still see a lot of taboo with gyn cancers. Also, many women are not educated about their own bodies. That is the starting point.
  • advocates of less prevalent cancers can definitely gain by working together to amplify their voices - collaborating where can

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

  • Huge patient advocate presence on social media - easier for patients to interact with each other and share knowledge
  • There has been a strong increase in advocacy efforts through resources and education from partners like @GYNCancer [correct tag @NOCC_national] @OCRFA
  • The cancer moonshot can only help. The PBS documentary on cancer last year helped too.
  • Progress with the Immuno-oncology drugs and other biologicals. Slow but steady improvement

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

  • Something I wonder about is uterine/endometrial cancer... why no large national organization when more cases than cervical, ovarian
  • Encouraging clinical trial participation
  • survivorship planning, end of life too
  • patient reported outcomes, quality of life, survivorship

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

  • I'd love to find more participants.
  • I'd love to see a .gov or neutral supported site with patient communities listed dr's could feel comfortable referring patients too. 

During tonight's chat we launched our 2016 #gyncsm Community Survey. All followers and chat participants are invited to answer the short 10 question survey which is located at .
We will collect responses from today until October 11, 2016.

We hope you will join us on Wednesday , October 12th at 9pmET for our chat Warrior? Fighter? The words we use... .

Remember you can always continue this conversation on Smart Patients at .

Co-founder #gyncsm 

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