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Disease-Specific Hashtags for Online Communication About Cancer Care
Background
•	 A majority of patients and health care professionals are now online
•	 Many cancer patients seek accurate health information online, which isn’t always easy to access or identify
•	 Robust, active communities emerged on Twitter using hashtags for breast cancer social media (#bcsm) and brain tumor social 	
	 media (#btsm) in 2011 and 2012, respectively
•	 Patient advocates started #bcsm and #btsm for advocacy and support, both including doctors with #bcsm involving one author (DJA) 	
	 as a collaborator
•	 A disease-specific ontology [structured tags without pre-existing use] was developed by two authors (MSK and PFA) and shared 	 	 	
	 online in July 2013
•	 After public commentary and discussion for community engagement, a finalized version was posted online in November 2013 	
	 on Symplur.com
•	 Initially described as a folksonomy (user-generated system), we defined the hashtag sets as an ontology, a structured system 	
	 designed a priori
•	 Our hypothesis is that cancer-specific hashtags are a promising way to facilitate access to accurate health information and 	
	 positive interactions
•	 Our aim was to retrospectively evaluate Twitter use of the Cancer Tag Ontology (CTO) and the types of users putting these 	 	 	 	 	
	 hashtags into tweets
Methods:
•	 We used data analytics of Twitter activity using the API (application program interface) using Symplur Signals
•	 We included all 25 hashtags in the CTO [Table 1]
•	 #bcsm and #btsm tags were studied April 2011 through Q3 of 2014
•	 The remaining tags in the CTO were studied from Q2 2013 through Q3 2014
•	 For each individual hashtag, we classified the 100 most active users by user type in the Symplur database [Table 2], confirmed 	
	 manually for accuracy by MSK
•	 For the entire CTO and each hashtag, we analyzed number of tweets and breakdown of stakeholders as endpoints
•	 For the entire CTO, we analyzed number of tweets and activity over the study period
Results:
•	 For the entire study period, there were a total of 531,765 tweets by 77,454 users [Figure 1]
•	 The two user-generated tags #bcsm and #btsm had the longest use and most activity with 249,312 and 110,465 tweets, respectively
•	 The most active new hashtags were those with organized Twitter-based chats: #ayacsm; #gyncsm; #lcsm; #mmsm; and #pancsm.	
	 These seven accounted for 93% of new hashtag use.
•	 In the cohort, 11% were patients, 20% doctors, 3% non-doctor healthcare professional, 32% individual, 30% healthcare organization,	
	 1% other organization, and 3% spam. [Figure 2a]
•	 The most active top users were patients with a median of 46 tweets. [Figure 2b]
•	 Differences in user mix for the tags with chats are highlighted in Figure 3.
•	 Activity using the CTO increased from 13,778 tweets in Q3 2011 to 75,960 tweets in Q3 2014 [Figure 4a]
•	 For the 23 structured tags, quarterly use increased from 18,098 tweets in Q3 2013 to 39,761 tweets in Q3 2014 [Figure 4b]
Conclusions:
•	 Hashtags can organize online conversations about health
•	 We have demonstrated the growth and feasibility of organized, cancer-specific hashtags on Twitter used by a variety of 	
	 stakeholders in cancer care
•	 Use of the CTO indicates the potential value of online interaction around specific diseases
•	 Further study is needed to determine whether the CTO:
	 o	 Improves access to accurate information or clinically relevant patient outcomes
	 o	 Provides a model for use in other areas of medicine
#adcsm	
Adrenal Cancer
#ancsm	
Anal Cancer
#ayacsm	
Adolescent & Young Adult Cancer
#bcsm	
Breast Cancer
#blcsm	
Bladder Cancer
#btsm	
Brain Tumors
#crcsm	
Colorectal Cancer
#esocsm	
Esophageal Cancer
#gyncsm	
Gynecologic Cancers
#hncsm	
Head & Neck Cancers
#hpbcsm	
Hepatobiliary Cancers
#kcsm	
Kidney Cancer
#lcsm	
Lung Cancer
#leusm	
Leukemia
#lymsm	
Lymphoma
#melsm	
Melanoma
#mmsm	
Multiple Myeloma
#pancsm	
Pancreatic Cancer
#pcsm	
Prostate Cancer
#pedcsm	
Pediatric Cancer
#scmsm	
Sarcoma
#stcsm	
Stomach Cancer
#thmcsm	
Thymoma & Thymic Carcinoma
#thycsm	
Thyroid Cancer
#tscsm	
Testicular Cancer
Figure 3: Twitter Use by Stakeholder Type for Each Hashtag
Figure 4a: Quarterly Twitter Activity
of the CTO, 2011-2014
Figure 2b: Median Tweet Activity
by Stakeholder Type
Table 1: Hashtags in the Cancer Tag Ontology
Figure 1: Tweets and Participants by Hashtag of Cancer Tag Ontology (Logarithmic Scale)
10
1,000,000
100,000
10,000
1,000
100
1
#adcsm
#ancsm
#ayacsm
#bcsm
#blcsm
#btsm
#crcsm
#esocsm
#gyncsm
#hncsm
#hpbcsm
#kcsm
#lcsm
#leusm
#lymsm
#melsm
#mmsm
#pancsm
#pcsm
#pedcsm
#scmsm
#stcsm
#thmcsm
#thycsm
#tscsm
6
1,624
17,973
249,312
537
110,465
5,143
380
17,125
929
157
723
86,289
1,396
1,575
1,844
11,205
2,531
7,162
13,871
149
322
12
371
664
5
350
1,465
21,453
244
32,913
1,466
177
2,362
415
81
446
9,221
512
440
695
1,130
841
2,057
645
78
180
9
25
244
Total Tweets and Participants - Logarithmic
Tweets Users who tweeted
Matthew S. Katz1
, Audun Utengen2
, Patricia F. Anderson3
, Michael A. Thompson4
, Michael Fisch5
, Claire Johnston6
, Deanna J. Attai7
, Lee Aase8
, Robert S. Miller6
, Thomas Lee2
, Don S. Dizon9 1
Lowell General Hospital, Lowell, MA; 2
Symplur, LLC, Los Angeles, CA; 3
University of Michigan, Ann Arbor, MI; 4
Aurora Research Institute, Aurora Health Care,
Milwaukee, WI; 5
AIM Specialty Health, Chicago, IL; 6
ASCO, Alexandria, VA; 7
David Geffen School of Medicine at University of California, Los Angeles, Los Angeles, CA; 8
Mayo Clinic, Rochester, MN; 9
Massachusetts General Hospital, Boston, MA Email: Matthew.Katz@lowellgeneral.org			 Twitter: http://bit.ly/ASCO15CTO
Figure 2a: Overall Stakeholder Mix of Users
of Cancer Tag Ontology
Patient
(P)
Non-Doctor
Healthcare
Professional
(HCP)
Doctor
(D)
Individual
Other
(I)
Healthcare
Organization
(HCO)
Organization
Other
(OO)
Spam
(S)
Table 2: Classification of Most Active Users of Each Hashtag in the CTO
Figure 4b: Monthly Twitter Activity
of Structured Tags, 2013-2014

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Disease-Specific Hashtags Guide Online Cancer Care Discussions

  • 1. Disease-Specific Hashtags for Online Communication About Cancer Care Background • A majority of patients and health care professionals are now online • Many cancer patients seek accurate health information online, which isn’t always easy to access or identify • Robust, active communities emerged on Twitter using hashtags for breast cancer social media (#bcsm) and brain tumor social media (#btsm) in 2011 and 2012, respectively • Patient advocates started #bcsm and #btsm for advocacy and support, both including doctors with #bcsm involving one author (DJA) as a collaborator • A disease-specific ontology [structured tags without pre-existing use] was developed by two authors (MSK and PFA) and shared online in July 2013 • After public commentary and discussion for community engagement, a finalized version was posted online in November 2013 on Symplur.com • Initially described as a folksonomy (user-generated system), we defined the hashtag sets as an ontology, a structured system designed a priori • Our hypothesis is that cancer-specific hashtags are a promising way to facilitate access to accurate health information and positive interactions • Our aim was to retrospectively evaluate Twitter use of the Cancer Tag Ontology (CTO) and the types of users putting these hashtags into tweets Methods: • We used data analytics of Twitter activity using the API (application program interface) using Symplur Signals • We included all 25 hashtags in the CTO [Table 1] • #bcsm and #btsm tags were studied April 2011 through Q3 of 2014 • The remaining tags in the CTO were studied from Q2 2013 through Q3 2014 • For each individual hashtag, we classified the 100 most active users by user type in the Symplur database [Table 2], confirmed manually for accuracy by MSK • For the entire CTO and each hashtag, we analyzed number of tweets and breakdown of stakeholders as endpoints • For the entire CTO, we analyzed number of tweets and activity over the study period Results: • For the entire study period, there were a total of 531,765 tweets by 77,454 users [Figure 1] • The two user-generated tags #bcsm and #btsm had the longest use and most activity with 249,312 and 110,465 tweets, respectively • The most active new hashtags were those with organized Twitter-based chats: #ayacsm; #gyncsm; #lcsm; #mmsm; and #pancsm. These seven accounted for 93% of new hashtag use. • In the cohort, 11% were patients, 20% doctors, 3% non-doctor healthcare professional, 32% individual, 30% healthcare organization, 1% other organization, and 3% spam. [Figure 2a] • The most active top users were patients with a median of 46 tweets. [Figure 2b] • Differences in user mix for the tags with chats are highlighted in Figure 3. • Activity using the CTO increased from 13,778 tweets in Q3 2011 to 75,960 tweets in Q3 2014 [Figure 4a] • For the 23 structured tags, quarterly use increased from 18,098 tweets in Q3 2013 to 39,761 tweets in Q3 2014 [Figure 4b] Conclusions: • Hashtags can organize online conversations about health • We have demonstrated the growth and feasibility of organized, cancer-specific hashtags on Twitter used by a variety of stakeholders in cancer care • Use of the CTO indicates the potential value of online interaction around specific diseases • Further study is needed to determine whether the CTO: o Improves access to accurate information or clinically relevant patient outcomes o Provides a model for use in other areas of medicine #adcsm Adrenal Cancer #ancsm Anal Cancer #ayacsm Adolescent & Young Adult Cancer #bcsm Breast Cancer #blcsm Bladder Cancer #btsm Brain Tumors #crcsm Colorectal Cancer #esocsm Esophageal Cancer #gyncsm Gynecologic Cancers #hncsm Head & Neck Cancers #hpbcsm Hepatobiliary Cancers #kcsm Kidney Cancer #lcsm Lung Cancer #leusm Leukemia #lymsm Lymphoma #melsm Melanoma #mmsm Multiple Myeloma #pancsm Pancreatic Cancer #pcsm Prostate Cancer #pedcsm Pediatric Cancer #scmsm Sarcoma #stcsm Stomach Cancer #thmcsm Thymoma & Thymic Carcinoma #thycsm Thyroid Cancer #tscsm Testicular Cancer Figure 3: Twitter Use by Stakeholder Type for Each Hashtag Figure 4a: Quarterly Twitter Activity of the CTO, 2011-2014 Figure 2b: Median Tweet Activity by Stakeholder Type Table 1: Hashtags in the Cancer Tag Ontology Figure 1: Tweets and Participants by Hashtag of Cancer Tag Ontology (Logarithmic Scale) 10 1,000,000 100,000 10,000 1,000 100 1 #adcsm #ancsm #ayacsm #bcsm #blcsm #btsm #crcsm #esocsm #gyncsm #hncsm #hpbcsm #kcsm #lcsm #leusm #lymsm #melsm #mmsm #pancsm #pcsm #pedcsm #scmsm #stcsm #thmcsm #thycsm #tscsm 6 1,624 17,973 249,312 537 110,465 5,143 380 17,125 929 157 723 86,289 1,396 1,575 1,844 11,205 2,531 7,162 13,871 149 322 12 371 664 5 350 1,465 21,453 244 32,913 1,466 177 2,362 415 81 446 9,221 512 440 695 1,130 841 2,057 645 78 180 9 25 244 Total Tweets and Participants - Logarithmic Tweets Users who tweeted Matthew S. Katz1 , Audun Utengen2 , Patricia F. Anderson3 , Michael A. Thompson4 , Michael Fisch5 , Claire Johnston6 , Deanna J. Attai7 , Lee Aase8 , Robert S. Miller6 , Thomas Lee2 , Don S. Dizon9 1 Lowell General Hospital, Lowell, MA; 2 Symplur, LLC, Los Angeles, CA; 3 University of Michigan, Ann Arbor, MI; 4 Aurora Research Institute, Aurora Health Care, Milwaukee, WI; 5 AIM Specialty Health, Chicago, IL; 6 ASCO, Alexandria, VA; 7 David Geffen School of Medicine at University of California, Los Angeles, Los Angeles, CA; 8 Mayo Clinic, Rochester, MN; 9 Massachusetts General Hospital, Boston, MA Email: Matthew.Katz@lowellgeneral.org Twitter: http://bit.ly/ASCO15CTO Figure 2a: Overall Stakeholder Mix of Users of Cancer Tag Ontology Patient (P) Non-Doctor Healthcare Professional (HCP) Doctor (D) Individual Other (I) Healthcare Organization (HCO) Organization Other (OO) Spam (S) Table 2: Classification of Most Active Users of Each Hashtag in the CTO Figure 4b: Monthly Twitter Activity of Structured Tags, 2013-2014