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