Showing posts with label Twitter. Show all posts
Showing posts with label Twitter. Show all posts

Saturday, January 18, 2020

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!

Saturday, July 6, 2019

Hashtag Collections and Communities - JCOCCI Article

I am so pleased to have co-authored and to have the #gyncsm community and chat be a part of a newly published article in the JCO Clinical Cancer Informatics journal.

Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities  

"Cancer tag ontology evolved from patient-centered, disease-specific, Twitter-based chats as a cooperatively designed system that has grown in use from 2011 to 2017. This article provides guidelines, challenges, and opportunities for using hashtags to develop online communities of interest."

Thank you Matt Katz, MD for spearheading this important work for physicians, patients and health care providers. 

Dee                                                                                                                                                      Every Day is a Blessing! 

 

 

 

 

Thursday, June 6, 2019

Education Sessions related to Communication at #ASCO19

I chose to attend two education sessions that dealt with communication. One Professional Development education session on Friday titled Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients and the other a Pediatric Education session on Monday titled Navigating a New Cancer Diagnosis : Guiding Communication and Education. Below are some tweets and comments on each session

5/31/2019 Tweets Chats and Posts: Using Social Media to Transcend Boundaries and Create Opportunities for Patients 

Dr Subbiah, A Big World Made Small Using Social Media to Optimize Patient Care
I have followed Dr Subbiah on Twitter for a few years now so it was very nice to meet her in person.Dr Subbiah spoke on how to use Social Media effectively.




Dr Meisel, Using Social Media to Improve Clinical Trial Access and Opportunities
Dr Meisel mentioned how some health care providers may see social media as one more thing to do in their already busy day but went on to show the benefits of participating in social media such as recruiting for clinical trials. 
Dr Hamilton, The Metastatic Breast Cancer Project

Dr Knoll, The Patient Perspective : Improving Patient Engagement in Clinical trials

6/3/2019 Navigating a New Cancer Diagnosis : Guiding Communication and Education

Dr Dobrozi Multidisciplinary Communication and Education Milestones Following a Cancer Diagnosis
Dr Mack Communication a New Cancer Diagnosis : From the Lense of the Patient and Caregiver


Dr Rosenberg Novel Approaches to Enhance the Educational Process and IMprove Patient Engagement

Some of the best advice to health care providers I heard at ASCO. 

Dee
Every Day is a Blessing!

Thursday, February 14, 2019

A 2019 Guide to Twitter

I wrote my first  Guide to Twitter and Tweet Chats in August 2013 prior to the first #gyncsm (Gyn Cancer Social Media ) chat. This post updates that information and is in line with the current layout and usage of Twitter.

What is Twitter?  How do I get a Twitter account?
Twitter is an online social media networking site.  People who use Twitter write text messages known as “Tweets”. In 2017, Twitter raised the character limit from 140 characters to 280 characters for each tweet.
Go to twitter.com to set up an account. You will be asked to choose a twitter name and a password. People follow me on twitter at @womenofteal.  You will be asked to fill in a profile so you may add a brief description of yourself and your interests. Remember the default setting on Twitter is Public, so anything you post on Twitter will be public and available to the entire “tweetersphere”. In other words anyone, even if a person does not have a Twitter account, can read what you wrote. 
 
You can set up a protected account but you have to approve each and every one of your followers. In this case your tweets and comments are only visible to those you have approved. Check out the Help Center pages of Twitter for how to set up an account.
Once you have an account you can follow the tweets of people, companies and organizations you are interested in. You can browse categories or search for the name of the person or company you want to follow. Once you find their Twitter page just click on the “Follow” button.
What is on my Home Page?
On your Home page you will see tweets by the accounts you follow and in the column on the right side you will find suggestions of who to follow and current trends. On the menu on the top of the page you will see a house (your home page), a # (trending hashtags), a bell (notifications), an envelope (direct messages),  a search box and your photo with your name ( links to your profile page).  
 
On the # page you will see the trending hashtags in the country you reside. You will also see current news tweets as well tweets from categories based on who you follow. In my case I see Health Care News. 

If you click on the bell icon you will be brought to your notifications page. This page will show you all tweets in which your handle was used including tweets that were "loved" and retweeted. The mentions column shows all tweets that replied to one of your tweets. 

When you click on the envelope icon you are brought to the message page. On this page you can message a person privately. The person you are messaging has to follow you in order to have the message system work.

What is a hashtag ?
A hashtag is a word or phrase( no spaces) preceded by a # that identifies a topic. I post many things with #ovca which stands for ovarian cancer and #gyncsm ( gyn cancer social media). The hashtag #gyncsm stands for Gynecologic Cancer Social Media. If you search that hashtag you will see what others are posting about gynecologic cancers. You can add information, share links, and be part of the community of women diagnosed with gynecologic cancers ( ovarian, endometrial , uterine, vulvar, GTC, fallopian tube, primary peritoneal). We invite patients, survivors, families, caregivers, researchers,  and health care providers to join the conversation.  On the second Wednesday of the month the community will meet at the same time 9pm ET to discuss different topics.
 
Basic Tweeting:
 
What if I want to send a Tweet to my followers?  
On the lower right of the Twitter page you will see a blue oval with a +, a feather quill and the word Tweet.  Click on that button and a blue box will appear and asks "What's Happening". Click in the box and start typing. At the bottom right you will see a + . When you click on that you may add a photo ( mountain icon), gif, or a poll ( bar chart icon) to your Tweet. 
 
What if I want to reply to what someone wrote in a Tweet? 
Click the talk bubble on the bottom left of the Tweet and type what you want to say. A list of who you are replying to appears above the area where your text appears.

What if I want to share an interesting Tweet with those that follow me? 
Just click on the clockwise arrows (second icon from the left) at the bottom of the original tweet.  A box will appear that lists the options Retweet, Retweet with Comment, or Cancel. Retweet will share the original tweet. Retweet with Comment allows you to write text including hashtags and by clicking on the + at the bottom of the Tweet allow you to add a photo ( mountain icon), gif, or a poll ( bar chart icon) to the original Tweet.

What is on my profile page? 
Your profile page includes a cover photo as well as a profile photo along with a short bio.  The menu bar shows Tweets, Tweets and Replies, Media ( those Tweets which include photos or video) and Likes ( the Tweets of others that you liked by clicking on the heart ).

What are lists? 
A Twitter list is a group of Twitter accounts that is curated. I own a few different lists which are groups which I created of accounts that are related to specific topic. You can add to an account to a  list when you follow an account. I have a list for cancer centers which is public but I also have a few private lists for important contacts, cancer doctors etc.
 
Now you are all set to join Twitter.  I hope you to see your tweets at #gyncsm. 
Dee
Every Day is a Blessing!

Tuesday, September 26, 2017

Day 26 A Month of Teal : Twitter Images for Advocacy

I use twitter to raise awareness of ovarian cancer both as an individual and as the co-moderator of the #gyncsm ( gyn cancer social media) chat.  Over the past few weeks I have compiled a few Tweets which shared informative images. Thank you OCRFA, SGO, NOCC, Foundation for Women's Cancer and the Sandy Rollman Ovarian Cancer Foundation for these images.


Full image
















Have you seen any photos or graphics that you feel have helped to raise awareness this month? Please share a link in the comments below.  

Dee
Every Day is a Blessing!

Saturday, November 5, 2016

Day 5 #HAWMC My Go To Platform - Twitter

Well I had high hopes that I would write each day for the Health Activist Writer's Month Challenge but it seems I already missed two days. So I will just have to jump in when I have the time to post. Here goes with today's challenge of writing about my Go To Platform.

I started blogging as Women of Teal back in 2007, joined Twitter in 2011, joined Instagram in 2012 and lastly took Women of Teal to Facebook in 2015.

So which is my Go To platform. 
Twitter

I can honestly say I have not only enjoyed it but I have made the most connections on that platform. I have  learned so much from other survivors, researchers , physicians and organizations and yes even the federal government. (I recommend you follow @TheNCI . ) I have asked questions and gotten almost instantaneous answers. I have shared losses which are sadly very common in the ovarian cancer world and I have gotten words of support. I have cheered on others in their journey with ovarian cancer and chatted with my #bcsm sisters about BRCA mutations and metastatic disease. Is it a challenge to write in 140 characters? You bet. So you have to make every word count. My best twitter experience is when @btrfly12 and I co-moderate the #gyncsm chat. (You should join us 2nd Wed of the month 9pm ET.)

So if you aren't on Twitter give it a try. Look for me. I'm @womenofteal. And be sure to say Hi!

Dee
Every Day is a Blessing! 

Wednesday, September 9, 2015

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!