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:
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?
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.
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.
Dee
Every Day is a Blessing!
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