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3/23/2018 Soc ia l Me dia Usa g e in the Northe rn Ne w E ng la nd Ca nc e r Community Bha vina Ba tukbha i MD, L uka s E me ry DO, Na ya n Ag a rwa l, F re de ric k L a nsig a n MD Disc losure We ha ve no c o nflic ts o f inte re

  1. 3/23/2018 Soc ia l Me dia Usa g e in the Northe rn Ne w E ng la nd Ca nc e r Community Bha vina Ba tukbha i MD, L uka s E me ry DO, Na ya n Ag a rwa l, F re de ric k L a nsig a n MD Disc losure We ha ve no c o nflic ts o f inte re st to de c la re , e xc e pt tha t we a ll a re use r o f va rio us so c ia l me dia pla tfo rms (fa c e b o o k, twitte r, I nsta g ra m) 1

  2. 3/23/2018 Introduc tion/ Ba c kg round  So c ia l me dia : we b -b a se d a nd mo b ile te c hno lo g y to o ls fo r the g e ne ra tio n, sha ring , a nd disc ussio n o f individua ls’ ide a s a nd c o nte nt  Co mmo n So c ia l me dia pla tfo rms use d b y pa tie nts a nd he a lthc a re pro vide rs inc lude :  F a c e b o o k  T witte r  Yo uT ub e  Suppo rt g ro ups a nd o nline c o mmunitie s suc h a s (ACOR.o rg [Asso c ia tio n o f Ca nc e r Online Re so urc e s] a nd Ca nc e rCo nne c t.c o m, Ca ring Bridg e .o rg )  L inke dI n  Go o g le + T he role of soc ia l me dia in c a nc e r c a re  Sha ring kno wle dg e , re c e iving / pro viding e mo tio na l suppo rt, le a rning fro m o the r pa tie nt’ s e xpe rie nc e s a nd re c e iving re a l-time fe e db a c k fro m o the r me mb e rs within the g ro up  A surve y o f 500 re spo nde nts sho we d 80% re po rte d a c c e ss to the I nte rne t, a nd 63% re po rte d se a rc hing fo r info rma tio n a b o ut c a nc e r o n the I nte rne t 1  I n 2012, a se a rc h o f F a c e b o o k a nd T witte r fo r b re a st c a nc e r a nd c o lo re c ta l inte re st g ro ups 2 re ve a le d:  216 b re a st c a nc e r g ro ups a nd 171 c o lo re c ta l c a nc e r g ro ups c re a te d within F a c e b o o k a nd T witte r  F a c e b o o k ha d hig he r usa g e ra te tha n T witte r (b re a st c a nc e r 80% vs. 20%; c o lo re c ta l c a nc e r 60% vs. 40%) 1: Ca stle to n K , F o ng T , Wa ng -Gilla m A, Wa q a r MA, Je ffe DB, K e hle nb rink L , Ga o F , Go vinda n R. A surve y o f Inte rne t utiliza tio n a mo ng pa tie nts with c a nc e r. Suppo rt Ca re Ca nc e r. 2011 Aug ;19(8) 2. De la T o rre -Díe z I, Día z-Pe rna s F J, Antó n-Ro dríg ue z M. A c o nte nt a na lysis o f c hro nic dise a se s so c ia l g ro ups o n F a c e b o o k a nd T witte r. T e le me d J E He a lth. 2012 Jul-Aug ;18(6) 2

  3. 3/23/2018 T he role of soc ia l me dia in c a nc e r c a re  T witte r usa g e , ho we ve r, ha s tre nde d up mo re in the pa st fe w ye a rs with ha shta g s # mmsm fo r multiple 3 a nd # lc sm fo r mye lo ma , # b c sm fo r b re a st c a nc e r lung c a nc e r.  So c ia l me dia is no w b e ing e xplo re d a s a me a ns to spre a d info rma tio n a nd inc re a se re c ruitme nt fo r c linic a l tria ls 4  I n a re c e nt study, T witte r ha s b e e n de e me d “a c o st- e ffe c tive me a ns o f re c ruitme nt, e na b ling e ng a g e me nt with po te ntia lly diffic ult-to -re a c h po pula tio ns, pro viding pa rtic ipa nts with tra nspa re nc y, a no nymity a nd a mo re a c c e ssib le me tho d b y whic h to pa rtic ipa te in he a lth re se a rc h” 5 . 3. www.usa to da y.c o m/ sto ry/ ne ws/ na tio n/ 2012/ 10/ 23/ b re a st-c a nc e r-g ro up-suppo rt/ 1637633/ 4. T ho mpso n MA. So c ia l me dia in c linic a l tria ls. Am So c Clin Onc o l E duc Bo o k. 2014:e 101-5 5. O'Co nno r A, Ja c kso n L , Go ldsmith L , Skirto n H. Ca n I g e t a re twe e t ple a se ? He a lth re se a rc h re c ruitme nt a nd the T witte rsphe re . J Adv Nurs. 2014 Ma r;70(3):599-609. do i: 10.1111/ ja n.12222. Influe nc e of SM on how c a nc e r pa tie nts se e k c a r e  Pa tie nts a re using inte rne t a nd so c ia l me dia to e duc a te the mse lve s a b o ut the ir c a nc e r. T he y a re a sking mo re q ue stio ns a nd a re ma king mo re info rme d de c isio ns.  Pa tie nts a re using sma rtpho ne s a nd ta b le ts inste a d o f pub lishe d ma te ria ls, to ke e p the mse lve s up to da te a b o ut the ir c o nditio ns a nd the ne w inno va tio ns.  Ma ny pa tie nts a re using so c ia l me dia pla tfo rms fo r so c ia l suppo rt g ro ups to e xc ha ng e info rma tio n a s we ll a s fo r e mo tio na l suppo rt 6 6. Atta i DJ, Co whe r MS, Al-Ha ma da ni M, Sc ho g e r JM, Sta le y AC, L a nde rc a spe r J. T witte r So c ia l Me dia is a n E ffe c tive T o o l fo r Bre a st Ca nc e r Pa tie nt E duc a tio n a nd Suppo rt: Pa tie nt-Re po rte d Outc o me s b y Surve y. J Me d Inte rne t Re s. 2015 Jul 30;17(7):e 188. 3

  4. 3/23/2018 Aim of our study  Ca nc e r pa tie nts in No rthe rn Ne w E ng la nd, a la rg e ly rura l a re a a re mo re g e o g ra phic a lly mo re iso la te d tha n in urb a n a re a s.  Ge o g ra phic a l dista nc e is no t a b a rrie r fo r the I nte rne t a nd so c ia l me dia -c o nne c te d pa tie nt, ho we ve r, g uida nc e o n so c ia l me dia usa g e is o f pa ra mo unt impo rta nc e .  We a im to e va lua te a nd suppo rt the so c ia l me dia inte re sts o f the o nc o lo g y po pula tio n in No rthe rn Ne w E ng la nd a nd to de ve lo p spe c ific pro g ra ms g e a re d to wa rds the ir spe c ific inte re sts. Me thods  No ve l q ue stio nna ire de ve lo pe d to me a sure a c c e ss, usa g e , a nd influe nc e o f inte rne t/ so c ia l me dia .  Surve ye d pa tie nts/ c a re g ive rs a s we ll a s he a lthc a re pro vide rs a c ro ss 3 NCCC lo c a tio ns.  T he pa tie nt/ c a re g ive r (PC) surve ys we re o ffe re d to pa tie nts in the c a nc e r c e nte r wa iting a re a , while the he a lthc a re pro vide r (HP) surve ys we re so lic ite d thro ug h e - ma il a nd a dve rtising thro ug h the NNE COS o rg a niza tio n.  T he surve ys we re do ne e ithe r o n pa pe r a nd e nte re d ma nua lly o r o nline with Surve y Mo nke y. 4

  5. 3/23/2018 BDB1 BDB2 PC De mog ra phic s Char ac te r istic s No. Pa tie nts 91% T ype of r e sponde r Ca re g ive rs 9% < 50 yo 20% Ag e >50 yo 80% F e ma le 59% Ge nde r Ma le 41% </ =$50,000 48% Inc ome > $50,000 52% Whe re do our pa tie nts c ome fr om??? 5

  6. Slide 9 BDB1 look up Geomaps and put in zipcode population data Bhavina DO Batukbhai, 3/2/2018 BDB2 heat map Bhavina DO Batukbhai, 3/2/2018

  7. 3/23/2018 T ype s of c a nc e r FL1 HP De mog r a phic s Char ac te r istic s No. Atte nding 27% RN/ APRN/ NP/ Nurse / PA-C 49% T ype of r e sponde r F e llo ws 8% Re side nt/ me dic a l stude nt/ o the rs 16% F e ma le 72% Ge nde r Ma le 28% 6

  8. Slide 11 FL1 Make legend bigger Frederick Lansigan, 2/28/2018

  9. 3/23/2018 Ac c e ss to inte r ne t a nd mobile de vic e s 99.0% Ac c e ss to mobile de vic e s 67.0% 99.0% Ac c e ss to inte rne t 89.0% 0.0% 20.0% 40.0% 60.0% 80.0% 100.0% 120.0% HP PC  Mo st PC a nd HP ha d a c c e ss to inte rne t (89% vs 99%), ho we ve r o nly 67% o f PC ha d a c c e ss to mo b ile de vic e s c o mpa re d 99% o f HP. T ype s of mobile s de vic e s owne d by PCs & HPs 1.0% Othe r s 3.3% 0% Don't know 0% 0% Windows 5.0% 24.5% Android 32.5% 0% Blac kbe r r y 2.5% 74.5% Iphone 56.7% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% HP PC  I pho ne wa s the pre fe rre d mo b ile de vic e b y b o th HP (74.5%) a nd PC (56.7%), with Andro id b e ing the se c o nd fa vo rite (HP 24.5% vs PC 32.5%) 7

  10. 3/23/2018 PCs/ HPs with c anc e r - r e late d app on the ir mobile s 71.6% No 76.3% 28.4% Ye s 23.7% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% HP PC  Only 23.7% o f PC a nd 28.4% o f HPs ha ve c a nc e r-re la te d a pplic a tio ns o n the ir mo b ile pho ne s. FL2 Whe r e do PCs se e k infor ma tion Othe r 4.6% Don't se e k info 8.5% F amily/ fr ie nds 34.7% Publishe d L ite r atute 31.8% Br oc hure s 34.7% Soc ial Me dia 5.1% Inte rne t 64.2% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% Pe r c e ntage  Our surve y re ve a le d tha t mo re tha n ha lf (64.2%) pa tie nts turn to the inte rne t fo r c a nc e r info rma tio n, while o nly 5.1% use d the so c ia l me dia fo r this purpo se . 8

  11. Slide 16 FL2 Maybe next to the graph, make text of the summary: Our patients turn to the internet but rarely to social media for cancer information. Frederick Lansigan, 2/28/2018

  12. 3/23/2018 BDB3 T ype s of soc ia l me dia use d by PC 80.0% Pe r sonal use 72.8% 70.0% Canc e r infor mation  Ab o ut 69% o f PC 59.0% 60.0% use d so c ia l me dia fo r 50.0% pe rso na l use , 40.0% while o nly 28% 31.1% use d it to o b ta in 30.0% 26.8% c a nc e r- re la te d 20.0% 15.6% info rma tio n. 12.6% 10.9% 8.1% 7.7% 10.0% 7.1% 4.1% 1.6% 2.7% 1.2% 1.2% 0.6% 0.0% 0.0% 0.0% 0.0% 0.0% F a c e book Youtube L inke d Insta g ra m F lic kr Pinte re st T witte r Sna pc ha t Othe r Don't use Soc ia l Me dia use a mong HPs 60.0%  73.8% o f HP use d Pe r sonal Use 51.0% SM fo r pe rso na l use , 50.0% Profe ssional use while o nly 16.7% HPs 39.2% 40.0% use d SM fo r 33.3% 31.4% pro fe ssio na l use . 30.0% 25.5% F a c e b o o k is the 21.6% pre fe rre d SM fo r 20.0% 13.7% 11.8% pe rso na l use while 9.8% 7.8% 10.0% 5.9% 5.8% L inke d fo r 2.0% 2.0% 2.0% 2.0% 2.0% 0.0% pro fe ssio na l use . 0.0% F a c e book Youtube Pinte re st Instag r am T witte r L inke d Doximity F lic kr None Only fe w HPs o pte d to use twitte r. 9

  13. Slide 17 BDB3 Bhavina DO Batukbhai, 3/2/2018

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