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Disease specific hashtags for communication about cancer care

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Patients deserve access to reliable health information. Doctors have an ethical obligation to make finding accurate information easier.

Using hashtags to organize discussions about specific cancers may be useful. This study describes the use and growth of organized disease-specific hashtags to expand access to reliable health information. This approach may be useful with other diseases but needs further study.

Published in: Healthcare

Disease specific hashtags for communication about cancer care

  1. 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

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