Monday, October 26, 2015

Cancer Patients on Twitter: A Patient Summit Presentation

Last week Alicia Staley and I presented "Building Community in 140 Characters"at the Eye for Pharma Patient Summit 2015 in Philadelphia. 

Before we talked about the #bcsm and #gyncsm communities we gave some background on Twitter, hashtags, The Health Hashtag Project and research on twitter communities.

Did you know that in June'15:
  • there were 316 Million monthly Twitter users?
  • there were 500 Million tweets sent per day? 
  • 19% of all adults are  on Twitter?

Did you know that the Symplur Healthcare Hashtag Project ( Sept 2015) :
  • includes almost 8000 healthcare hashtags?
  • covers over 15,000 healthcare topics? 

Did you know that patients have been the driving force behind the cancer hashtags and chats? 
Examples of patient let communities include: 
#BCSM-breast cancer social media
#BTSM-brain cancer social media
#ayacsm- adolescent & young adult cancer social media
#gyncsm-gynecologic cancer social media
#lcsm-lung cancer social media 
#panscm-pancreatic cancer social media  #mmsm-multiple myeloma social media
We also presented information from the poster  Dr Matthew Katz, et al  presented at the ASCO 2015 Annual Meeting.
Disease Specific Hashtags for Online Communication about Cancer Care concluded that: 
Hashtags can organize online conversations about health
The use of organized, cancer-specific hashtags on Twitter by a variety of stakeholders in cancer care is not only possible but has grown
Use of the Cancer Tag Ontology (CTO) indicates the potential value of online interaction around specific diseases
Further study is needed to determine whether the CTO: Improves access to accurate information or clinically relevant patient outcomes

Alicia Staley presented information about the #BCSM community including this study published in the Journal of Medical Internet Research which found that 67% of the women who initially reported high anxiety before the chat reported no or low anxiety after participating.

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

They concluded that "breast cancer patients' perceived knowledge increases and their anxiety decreases by participating in a Twitter Social Media support group.  

I presented information about the #gyncsm community including what we learned from our 2014 community survey.

Why did you participate?

To chat with others with same interests but from different perspectives

learn, share, support

to help the community of survivors
After participating in the chat:

41% of the participants made a change in your personal or professional routine/practice

37% of the participants advocated for yourself or another

54% of the participants used or refer someone to one of the resources mentioned in a chat or listed on our blog  

 In conclusion we noted that: 

There are active, engaged patients who are helping each other but many also want to be at the table in making changes in healthcare. Come find us on Twitter and listen.

Every Day is a Blessing!

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