Sharing the Best of Cancer Communities on Twitter

Earlier this month I traveled to Houston, invited to speak at the NRG Oncology Semi-Annual Meeting during a Social Media Workshop.

I was a bit nervous but also excited to share with oncologists and other cancer professionals: what is community, how cancer hashtags were developed, how cancer communities were founded on Twitter, the benefits of cancer communities and how we can learn what patients need from these communities.

Did you know that most Twitter cancer communities were founded by patients and that many of their moderators are oncologists? Did you know that many of these communities hold regular chats?
Did you know that both #bcsm and #gyncsm have had papers published based on their community members needs and support they find in these communities.

• #bcsm published Twitter Social Community is an Effective Tool for Breast Cancer Patient Education and Support: Patient -Reported Outcomes by Survey  (https://www.jmir.org/2015/7/e188/) in the Journal of Medical Internet Research in 2015 and concluded that patients perceived knowledge increased and anxiety decreased after participation in a Twitter Social Media support group. 
• #gyncsm published in the Journal of Patient Centered Research and Reviews in an article titled, The Needs of Women Treated for Ovarian Cancer: Results from a #gyncsm Tweet Chat (https://digitalrepository.aurorahealthcare.org/jpcrr/vol5/iss2/3/) . Authors found that women felt more vulnerable and had increased emotional concerns after treatment ended while during treatment women were more concerned about side effects and physical concerns during treatment. 

I finished up my talk with these comments/recommendations.

I hope that more oncologists and patients will participate in these communities - we have so much to learn from each other.

I want to than NRG Oncology ( @NRGonc),  Dr T. Julian ( @TBJulianMD) and Dr Becca Previs (@BeccaPrevisMD) for the opportunity to share my knowledge of Twitter Cancer Communities with you.


Dee
Every Day is a Blessing!

#CANCERSM Chat topic 11-Jul-2019: Basics of Biomarker Testing

A number of cancer Twitter communities( #gyncsm, #bcsm, #btsm,#lcsm etc) are joining together for a chat on Biomarkers on Thursday, July 11, 2019 I hope some of my followers will join that chat at 8pm ET. pPathologist Dr. Timothy Craig Allen (@TimAllenMDJD) will be moderating the chat.Learn more by reading the post below by Janet Freeeman-Daily.

#CANCERSM Chat topic 11-Jul-2019: Basics of Biomarker Testing
Until just a few years ago, chemotherapy was often the only option for some cancer patients. In just a
few short years, molecular therapies and immunotherapies have become commonplace as treatments
for cancer patients. But determining whether a particular cancer patient is a candidate for these new,
often very expensive, molecular and immunotherapies requires molecular biomarker testing. For manycancer patients and their families, the role of molecular biomarker testing in their diagnosis is a
unfamiliar and confusing. How is testing performed? How is the test result analyzed? What is involvedin getting helpful answers from biomarker testing? Does liquid biopsy have a role?
Pathologists are specialized doctors responsible for answering these questions. They identify any cancercells in the biopsied specimen, and guide the patient’s biomarker testing. Unfortunately, pathologists donot typically speak with patients, so patients and families–and even some doctors–often do not have aclear understanding of the role of molecular biomarker testing in the diagnosis and treatment ofcancers. Learning more about the basics of biomarker testing can help patients and families cut throughthe hype about biomarker testing, understand the patient’s specific disease more thoroughly, and learn what biomarker test results mean to the patient’s cancer treatment.

Please join moderator and pathologist Dr. Timothy Craig Allen (@TimAllenMDJD) at 8 PM Eastern Time
on Thursday, July 11, 2019, for a discussion about the basics of biomarker testing, a subject potentially
affecting all cancer patients and doctors. We will cover the following topics:
• T1: What is a biomarker and how is it identified?
• T2: What is biomarker testing and what is it used for?
• T3: What treatment options can be identified through biomarker testing?
• T4: What biomarker tests should be run for which types of cancers? What is a liquid
biopsy and when is useful?
• T5: Can and should patients pursue biomarker testing for treatment options if their
doctor does not offer it?

Please remember to include #cancersm in ALL your tweets so the other chat participants can see them.
If you need a refresher, read the #LCSM primer on participating in a Twitter chat (the hashtag in your
tweets will be #cancersm, not #LCSM). Note that some tweetchat apps (like tchat.io) will not display
tweets longer than 140 characters. Hope you’ll join us!


Dee
Every Day is a Blessing!

Let's Chat- A 2019 Guide to Tweet Chats

In 2013,  I wrote a two-part series called A Guide to Twitter and Tweetchat Part I   and Now Let's Chat - A Guide to Twitter and Tweet Chat Part II. I recently updated Part I ( A 2019 Guide to Twitter) and thought it would be beneficial to others if I updated the post on how to chat as well. As moderator of the #gyncsm chat I have used #gyncsm as the chat example.

What is a Tweetchat?

A Tweetchat is a virtual gathering of people discussing a particular subject. Using a unique hashtag helps identify the tweets that belong to the discussion. If you join the #gyncsm community for one of their chats ( 2nd Wed of the month at 9pm ET) you will add the hashtag #gyncsm to each tweet. The conversation happens in real time and can take place at a fast pace.

The first time I joined the #BCSM (breast cancer social media) chat back in 2013, I searched for #bscm on twitter and followed along. I wrote some tweets but I forgot to use the hashtag twice and had to type in the tweets again with #bcsm . It was a bit of a challenge remembering and following along with the questions and comments. You can continue to join a chat by searching for  a hashtag ( such as #gyncsm) in the Twitter search box which brings you to the #gyncsm page . If you hit latest in the menu on the top of the page , your screen will show you the stream of tweets that include #gyncsm at that time. It will update as new tweets are posted using that hashtag.

Tweet Chat Tools

Since the #gyncsm chat began in 2013 I have had a chance to not only research tools which make it easier to participate in chats but have been able to test them out under real-life Chat conditions.The sites automatically add the hashtag to each tweet you write. In no particular order here are a few that will make participating in a chat easier.

 TweetChat (http://tweetchat.com/).

All you  have to do is go to the site, sign in with your Twitter account and enter #gyncsm in the “Enter a hashtag to start” box. When the page opens you will see a box at the top of the page where you enter your tweet. The #gyncsm hashtag is automatically added to your tweet.

Below this box you will see all the tweets in the chat room. You can set the rate at which the chat window refreshes, stop and start the stream and change the "room" settings. Of course you can also Tweet, reply to, retweet and like a Tweet all from one page.  

Tchat.io ( http://www.tchat.io/) .

Once you sign in with your Twitter account and enter #gyncsm in the box next to "start Chatting" the chat page will look similar to the Tweeetchat page. A box on top of the page allows you to enter text to tweet and automatically adds the hashtag. You can hide retweets and pause the stream too.

 Below this box will be all the recent tweets which you can reply to, retweet, quote and like a Tweet.

TweetDeck (http://tweetdeck.com/)

As a moderator, TweetDeck is one of my favorite to use. Once you sign in you will be able to set up columns of information - Home, User, Notifications, Message, Followers etc.  I set mine up to show #gyncsm, my stream, my notifications, followers and messages. During a chat I usually have my New Tweet column open all the time.

When you want to use TweetDeck for a chat you can add a column ( look for the + on the left ) and choose search. In the search box on the top type in #gyncsm. (This is the column to the right of the New Tweet column in the photo above.) When you hit reply in a Tweet that tweet will appear in the blue column and you can reply below it. When you hit retweet a new window opens and you can simply retweet to your followers or click on retweet with comment. This allows you to add text. If you start a new text you will have to add the hashtag being used during the chat (#gyncsm ). I like the ability to easily add a photo to the tweet as well as schedule a tweet.

I recommend that you don’t wait till the night of the chat to sign up for these tools but test them out a day or two ahead of time. Even if the hashtag stream is not busy you can still try out different aspects of the site.

So what happens on a #gyncsm chat night?

The #gyncsm chat takes place on the second Wednesday of the month at 9pm EST. Our first chat occurred on September 11, 2013. A few minutes before the 9pm EST start time sign in to Tweetchat or the site you prefer. You will see that some of us have already tweeted using the hashtag to remind our followers to join us. The #gyncsm hashtag and other cancer communities like #bcsm, #lcsm are used all the time not just during chat time to share information of interest to our respective communities. 

The  #gyncsm Chat Format

Introductions  (9:00-9:10 pm EST)

All moderators will introduce themselves. We will then ask those who feel comfortable doing so to introduce themselves. Don’t worry if you feel like just “eavesdropping” on the conversation that is OK. You can always tweet us (@gyncsm)  or tweet a simple " statement such as "#gyncsm I'm listening"or e-mail us (gyncsm@gmail.com) with questions/comments after the chat is over.

Questions/ Discussion (9:11- 9:49pm ET) 

Each chat will have a specific discussion topic.  The moderators and our guests will be prepared to share links that relate to our night’s topic. The discussion will revolve around 4-5  questions regarding the night’s topic. As we post each topic /question everyone is invited to comment. We ask that you be sure to use T1,T2, T3... in your reply so that we know which question  you are responding to. When we have special guests (authors, advocates, researchers or social workers) join us for a chat the format may be modified for those occasions. During many chats we ask participants to please  refrain from asking questions about your own personal health issues.  Rather jot those questions down and call or speak to your doctor at your next visit. 

Summary /Closing Remarks (9:50- 10:00pm)

During this time we will ask you to share what you learned by using TIL- "Today I Learned "in the tweet. We will also remind you of the date, time and topic of our next chat. 

Chat Tips

Here are some things to keep in mind if you are new to chats:

• You may use 280 characters per tweet.
• The pace may be quick at times with participants commenting but please don’t be discouraged. You can scroll back in the conversation to catch up. For most health related chats transcripts are available on the communities website ( gyncsm.blogspot.com for gyncsm) or on the Symplur website. (https://www.symplur.com/healthcare-hashtags/gyncsm/) 
•  Please try to stay on topic. Side conversations are distracting and will make a crowded discussion more difficult to follow.
• Try to keep retweets to a minimum so that the discussion can flow smoothly. 
• The chat is not the place to promote your project / book / event/ fundraiser. We know you are all doing wonderful things please feel free to share with all after the chat is completed.
• Be mindful that although we may all be dealing with a gynecologic cancer,  the experiences we have may not be  the same.  Please do not criticize another person's treatment decision.

We hope you will let us and other chat moderators know if there is anything we can do to make our chat's better.

A special thank you to the ladies of #bcsm for being a model of  how a successful chat is run.

Dee

Join the #Gyncsm Chat - It's our 2nd Anniversary

As many of you know Christina Lizaso and I co-founded the #gyncsm community on Twitter in 2013. This month marks our 2nd anniversary as a Twitter community.

 Tonight at 9pm EST I will be co-moderating the #gyncsm chat. The chat topic is  Gyn Cancer Awareness Month - Spotlight on Uterine/Endometrial Cancer.  I hope you will join us and share what you are doing to raise awareness of gynecologic cancers this month and learn about uterine and endometrial cancers. We happy a few survivors will share their experience with uterine cancer with us.

If you haven't yet joined a chat it is easy. You don't even need to have a Twitter account but if you want to share or comment on a Tweet you need to have an account and log in. I blogged about getting started on twitter  in 2013. You can read it here. New to chats? Check out this #gyncsm post http://www.gyncsm.blogspot.com/2013/09/lets-chat.html .

Looking forward to having you join us.

Dee
Every Day is a Blessing! 

We Did It! A Gyn Cancer Community is Formed!

As you know in August I agreed to be the co-moderator of the #gyncsm (gynecologic cancer) community tweet chat. Our first chat was scheduled for  Sept 11th.  There was a flurry of e-mails and tweets between myself and my co-moderator and the wonderful doctors who have agreed to advise and help moderate the chat.

I created a blog (http://gyncsm.blogspot.com/) for the community and looked for sources to share during our discussion. Each day Christina Lizaso, my co-moderator and I tweeted about the chat to promote the event and contacted those we thought might be interested in joining us. Christina developed the topics for discussion and a script for the night so we would cover everything we hoped to cover.

Then on Sept 11th at 9pm EST the chat began. It was wonderful to see survivors,  doctors as well as caregivers, organizations and advocates join our discussion. We discussed the importance of seeing a gynecologic specialist, symptoms of our cancers and what they hoped to get from being part of our chat. If you missed joining us you can find the transcript here. In the end we had 38 participants and over 400 tweets using #gyncsm during that hour.

I still think it is pretty cool that we could put this all together in about a month's time, never meeting face to face. We communicated through twitter and e-mail. And we could only do it because of the hard work of my co-moderator  and the support of our doctors Matthew Katz MD, MJ Markham MD, Rick Boulay MD, Don Dizon MD as well as Tamika and Friends and the Society of Gynecologic Oncologists. Thank you to everyone who joined us. We look forward to building a vibrant supportive community for those impacted by gynecologic cancers.

Remember the #gyncsm chat is the second Wednesday of the month at 9pm EST. Looking forward to discussing Genetics and Personalized Medicine at our October 9th chat.

Dee
Every Day is a Blessing!

The Inaugural #gyncsm Chat

All gynecologic cancer survivors, caregivers 

and health care providers

are cordially invited to join us for the

 inaugural #gyncsm tweet chat

September 11, 2013

9pm EST/ 8 CST/ 6PST

Advocate Moderators:

Christina Lizaso @btrfly12

Dee Sparacio @womenofteal

Health Care Advisors / Moderators:

Rick Boulay, MD  @journeycancer

Don Dizon , MD @drdonsdizon

MJ Markham, MD@DrMarkham

Dr Ann Becker-Schutte @DrBeckerSchutte

Dr Matthew Katz  @subatomicdoc

Organizations:

Society of Gynecologic Oncologists

Tamika and Friends

Chat Topics for 9/11:

Treatment of gynecologic cancers by gynecologic specialists

Ovarian Cancer awareness/ symptoms

Chats will occur monthly on the second Wednesday of the month. ( Sep 11, Oct 9, Nov 13, Dec 11.)

Please follow @gyncsm , #gyncsm 

If you are not familiar with twitter I will be posting details about how join twitter and follow a chat. Be sure to check back in the next week for more information.

I am thrilled to be a part of this undertaking and want to thank everyone who has helped establish this chat. 

Dee

Every Day is a Blessing!