Disease-Specific Hashtags for Online Communication About Cancer CareBackground• Amajorityofpatientsandhealthcareprofessionalsarenowonline• Manycancerpatientsseekaccuratehealthinformationonline,whichisn’talwayseasytoaccessoridentify• Robust,activecommunitiesemergedonTwitterusinghashtagsforbreastcancersocialmedia(#bcsm)andbraintumorsocial media(#btsm)in2011and2012,respectively• Patientadvocatesstarted#bcsmand#btsmforadvocacyandsupport,bothincludingdoctorswith#bcsminvolvingoneauthor(DJA) asacollaborator• Adisease-specificontology[structuredtagswithoutpre-existinguse]wasdevelopedbytwoauthors(MSKandPFA)andshared onlineinJuly2013• Afterpubliccommentaryanddiscussionforcommunityengagement,afinalizedversionwaspostedonlineinNovember2013 onSymplur.com• Initiallydescribedasafolksonomy(user-generatedsystem),wedefinedthehashtagsetsasanontology,astructuredsystem designedapriori• Ourhypothesisisthatcancer-specifichashtagsareapromisingwaytofacilitateaccesstoaccuratehealthinformationand positiveinteractions• OuraimwastoretrospectivelyevaluateTwitteruseoftheCancerTagOntology(CTO)andthetypesofusersputtingthese hashtagsintotweets
Methods:• WeuseddataanalyticsofTwitteractivityusingtheAPI(applicationprograminterface)usingSymplurSignals• Weincludedall25hashtagsintheCTO[Table 1]• #bcsmand#btsmtagswerestudiedApril2011throughQ3of2014• TheremainingtagsintheCTOwerestudiedfromQ22013throughQ32014• Foreachindividualhashtag,weclassifiedthe100mostactiveusersbyusertypeintheSymplurdatabase[Table 2],confirmed manuallyforaccuracybyMSK• FortheentireCTOandeachhashtag,weanalyzednumberoftweetsandbreakdownofstakeholdersasendpoints• FortheentireCTO,weanalyzednumberoftweetsandactivityoverthestudyperiod
Results:• Fortheentirestudyperiod,therewereatotalof531,765tweetsby77,454users[Figure 1]• Thetwouser-generatedtags#bcsmand#btsmhadthelongestuseandmostactivitywith249,312and110,465tweets,respectively• ThemostactivenewhashtagswerethosewithorganizedTwitter-basedchats:#ayacsm;#gyncsm;#lcsm;#mmsm;and#pancsm. Thesesevenaccountedfor93%ofnewhashtaguse.• Inthecohort,11%werepatients,20%doctors,3%non-doctorhealthcareprofessional,32%individual,30%healthcareorganization, 1%otherorganization,and3%spam.[Figure 2a]• Themostactivetopuserswerepatientswithamedianof46tweets.[Figure 2b]• DifferencesinusermixforthetagswithchatsarehighlightedinFigure 3.• ActivityusingtheCTOincreasedfrom13,778tweetsinQ32011to75,960tweetsinQ32014[Figure 4a]• Forthe23structuredtags,quarterlyuseincreasedfrom18,098tweetsinQ32013to39,761tweetsinQ32014[Figure 4b]
Conclusions:• Hashtagscanorganizeonlineconversationsabouthealth• Wehavedemonstratedthegrowthandfeasibilityoforganized,cancer-specifichashtagsonTwitterusedbyavarietyof stakeholdersincancercare• UseoftheCTOindicatesthepotentialvalueofonlineinteractionaroundspecificdiseases• FurtherstudyisneededtodeterminewhethertheCTO: o Improvesaccesstoaccurateinformationorclinicallyrelevantpatientoutcomes o Providesamodelforuseinotherareasofmedicine
#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
1,000,000100,000
10,0001,000
100
1
#adc
sm
#anc
sm
#aya
csm
#bcs
m
#blc
sm
#bts
m
#crc
sm
#eso
csm
#gyn
csm
#hnc
sm
#hpb
csm
#kcs
m
#lcs
m
#leu
sm
#lym
sm
#mel
sm
#mm
sm
#pan
csm
#pcs
m
#ped
csm
#scm
sm
#stc
sm
#thm
csm
#thy
csm
#tsc
sm
6
1,62
4 17,9
73 249,
312
537
110,
465
5,14
3
380
17,1
25
929
157 72
3
86,2
89
1,39
6
1,57
5
1,84
4 11,2
05
2,53
1
7,16
2
13,8
71
149 32
2
12
371
664
5
350 1,
465 21
,453
244
32,9
13
1,46
6
177
2,36
2
415
81
446
9,22
1
512
440 69
5
1,13
0
841 2,
057
645
78 180
9
25
244
Total Tweets and Participants - Logarithmic
Tweets Userswhotweeted
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 1Lowell General Hospital, Lowell, MA; 2Symplur, LLC, Los Angeles, CA; 3University of Michigan, Ann Arbor, MI; 4Aurora Research Institute, Aurora Health Care, Milwaukee, WI; 5AIM Specialty Health, Chicago, IL; 6ASCO, Alexandria, VA; 7David Geffen School of Medicine at University of California, Los Angeles, Los Angeles, CA; 8Mayo Clinic, Rochester, MN; 9Massachusetts General Hospital, Boston, MA Email: [email protected] Twitter: http://bit.ly/ASCO15CTO
Figure 2a: Overall Stakeholder Mix of Usersof Cancer Tag Ontology
Patient(P)
Non-Doctor Healthcare
Professional(HCP)
Doctor(D)
IndividualOther
(I)
HealthcareOrganization
(HCO)
OrganizationOther(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
