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

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

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? 

• @Sgo_org @GYNCancer @OCRF
• NOCC of course
• Advocacy organizations are vital to raising awareness @GYNCancer [correct tag @NOCC_national] @OCRFA @CancerSupportCm @gyncsm 

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 www.surveymonkey.com/r/STHG6RC .
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 https://www.smartpatients.com/gyncsm .

Dee
Co-founder #gyncsm 

December 9: Looking Back...Looking Forward

This month's chat gave us an opportunity as individuals and a community to reflect on the past year and prepare for the new year. We had 38 participants take part in the chat and had over 13 Million impressions. You may find our transcript here and our analytics here.

Before we began discussing our questions we announced that after two years as one of our healthcare moderators, Dr. Don Dizon will be stepping down. We appreciate the time, support and insights Dr. Dizon shared with us as we built our community. We are pleased that Dr. Shannon Westin will be joining Dr. Merry Markham, Dr. Rick Boulay and Dr. Anne Becker-Schutte as a healthcare moderator.

Our questions and some responses:

T1: What are some things you did in 2015 that brought you satisfaction? What steps have improved your overall quality of life?

• Spending time with family
• Painting
• Drinking more water each day
• Getting rid of negativities and dwelling on the positivities
• I teamed up with PBS to create a documentary on cancer survivorship, due out next June @journeycancer
• Thrilled that Sunstone Press published my book @BrightHeidi
• published our data regarding health issues experienced by gyn ca survivors during and after treatment http://www.ncbi.nlm.nih.gov/pubmed/26245979 - Dr. Shannon Westin
• release of book 100 Questions and Answers About Ovarian Cancer - Dr. Don S. Dizon and Dee Sparacio

T2: Is there something you wish you did differently this year? Do you have plans to try something new in 2016?

• try exercising in 2016
• wish I had taken more time to relax and be with my family
• take a little time for my self
• Get back to reading a novel per month

T3: What has #gyncsm done well? What do you find most helpful from our chats, posts, blog, etc.?

• All & anything #gyncsm is doing is great! Communication is KEY to unlock my future!
• The forum to post ideas and support the community
• Brought together patients, clinicians, physicians, researchers, etc all in one supportive community
• GYNCSM filled a the void of an online active women's cancer social network
• The advantage of #gyncsm is the good signal/noise ratio and an active group of people who care.

T4: How might we enhance the #gyncsm community for ALL participants? What would you like to see from #gyncsm in 2016?

• anyone be interested in discussing some research presented at national meetings?maybe quarterly? Or build a relevant paper into the topic of the month
• a journal club would be a neat idea
• Maybe have a list of folks who might be interested in helping w/ research? Always looking 4advice from pts!
• We'd love to reach more survivors, loved ones and caregivers. Your ideas are welcome.
• perhaps creating connections at oncologists' offices to bring in others

T5: How might #gyncsm foster collaboration in the women's cancer space? Topics you'd like to see covered? Ideas to get more people involved?

• Definitely increase the interaction with @SGO_org - this has already started!
• Realistic & mentally sound advice i.e. Sex after Hysterectomies

We ended our chat as we always do asking participants to complete the statement Today I Learned (TIL).

• TIL-again-the commitment and compassion that is the backbone of the @gyncsm community.
• TIL (but really knew already) GYNCSM is a great group committed to advocacy and education for women's cancer survivors …
• TIL: Self care is essential to be able to care for others

Christina and I thank you for a wonderful year of conversations.


We look forward to having you all join us again in the New Year. We begin 2016 with a discussion on Caring for the Caregiver. We hope you will join us on Wednesday January 13, 2016 at 9pm ET.


Wishing our entire community Happy Holidays!


Dee
Co-Moderator

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