Thursday, September 11, 2014

1st Anniversary Chat- Advocacy for Yourself and Others

September is the one year anniversary of the #gyncsm chat. Before providing the information about this month's chat, Christina and I would like to thank:
  • Our health care moderators: Dr. Don S. Dizon, Dr. Rick Boulay, Dr. Merry J. Markham and Dr. Ann Becker-Shutte for their support, participation and guidance.
  • Dr. Matthew Katz for helping us write our Tweet Disclaimer, for responding to those first "Wish we had a community for gyn cancer survivors like #bcsm" tweets, and for continued input and guidance.
  • The #bcsm community for allowing us to model your community and join in your conversations. 
  • The Society of Gynecologic Oncologists for supporting this chat and spreading the word about our online community. 
  • OCNA for welcoming us as a Partner Member and sharing our tweets.
  • The gynecologic cancer survivors who have participated in our chats for sharing your experiences and supporting others diagnosed with your disease.  
  • The health care providers, cancer researchers and organizations who join us from near and far. Your insight is invaluable and your interest in your patients physical and emotional well-being should be mimicked by providers and researchers and organizations everywhere.
Without all of you the #gyncsm community would not have grown from two women interested in advocating for gyn cancer survivors to a vibrant strong community.

In an effort to get your feedback and suggestions we ask you to fill out the #gyncsm survey which can be found at https://www.surveymonkey.com/s/5QNDJ7K

This month's chat was about Advocating for Yourself and Others. We were joined by Globeathon (@globeathon) and ovarian cancer advocate Gwen Harding-Peets (@greenP11). We had 56 participants, 691 tweets in the hour and over 1.5M impressions.  The full transcript is available here.

The topics covered were:
T1: How do you personally advocate for your own gyn health, the health of your patients or, as a caregiver/loved one, for others?

T2: What skills & tools do you need to be an effective advocate for yourself or your loved ones in the healthcare system? 

T3: What issues in the GYN cancer community do you think we need to draw attention to?

T4A: How can GYN cancer groups, especially #gyncsm & @globeathon, help you better advocate for yourself and others about GYN cancers?
T4B: What are the hurdles & barriers in in advocating for yourself and others & in raising GYN cancer awareness?

T5A: Pls share local/national/global patient advocacy groups you work w/ – include twitter name and/or website & location if you can 
T5B: Also share - How are you raising awareness about GYN cancers during this awareness month/year-round?

Next month's chat is on Recurrences and will be held on October 8, 2014 at 9pm EST.

We hope you can fill out our survey.

Resources:

Starbryge Health Online
http://starbrydge.com/

Google Alert for #ovariancancer

SHARE national helpline: 866-537-4273 @SHAREing 
http://www.sharecancersupport.org/share-new/

Support Connection
http://supportconnection.org/

@OCNA Advocacy at Home, Advocate Leader program & Research Advocate program 
http://www.ovariancancer.org/what-we-do/grassroots/

Peach Outreach - great advocacy group for endometrial cancer
http://peachoutreach.com/

@OCRF Woman to Woman Program
http://womantowoman.ocrf.org/


Foundation for Women's Cancer - Information, Toolkits, Campaigns
http://www.foundationforwomenscancer.org/
http://www.foundationforwomenscancer.org/wp-content/uploads/GCAM-Toolkit-2014.pdf
https://www.facebook.com/media/set/?set=a.825730620800713.1073741832.190565747650540&type=1

Government Sites
http://healthfinder.gov/
http://www.nlm.nih.gov/medlineplus/

#GotTeald someone today!
http://www.whyteal.org/got-teald/

Volley - Notes to Researchers
http://notestoresearchers.weebly.com/notes-to-researchers.html

@CancerAdvocay Legislative Advocacy Training Modules
http://www.canceradvocacy.org/cancer-advocacy/getting-started/

Yahoo group: OvarianCancerSupportCommunity

Linda Young Ovarian Cancer Support Program
https://www.facebook.com/LindaYoungOvarianCancerSupportProgram
 
Blogs:
Joanie Triestman http://joanietri.wordpress.com/
I Have Lynch syndrome http://www.ihavelynchsyndrome.com/

Other Organizations:
@PatientAdvocFou

Article links:
Study: Half 26-35yr women unable to identify vagina on a diagram
http://www.telegraph.co.uk/women/womens-health/11063825/Half-of-young-women-cant-locate-their-vaginas.html
Dispelling the Myths About Palliative Care
http://palliativeinpractice.org/2013/10/03/dispelling-the-myths-about-palliative-care/

See you next month!
Dee
Co-moderator

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