Soc ia l Me dia Usa g e in the Northe rn Ne w E ng la nd Ca nc e - - PDF document

3/23/2018 1

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)

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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 t1  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 ups2 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

• 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
• 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)

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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 mye lo ma , # b c sm fo r b re a st c a nc e r

3 a nd # lc sm fo 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 ls4  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 rt6

• 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 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.

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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.

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PC De mog ra phic s

Char ac te r istic s No. T ype of r e sponde r

Pa tie nts 91% Ca re g ive rs 9%

Ag e

< 50 yo 20% >50 yo 80%

Ge nde r

F e ma le 59% Ma le 41%

Inc ome

</ =$50,000 48% > $50,000 52%

BDB1 BDB2

Whe re do our pa tie nts c ome fr

• m???

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

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T ype s of c a nc e r

FL1

HP De mog r a phic s

Char ac te r istic s No. T ype of r e sponde r

Atte nding 27% RN/ APRN/ NP/ Nurse / PA-C 49% F e llo ws 8% Re side nt/ me dic a l stude nt/ o the rs 16%

Ge nde r

F e ma le 72% Ma le 28%

Slide 11 FL1 Make legend bigger

Frederick Lansigan, 2/28/2018

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Ac c e ss to inte r ne t a nd mobile de vic e s

89.0% 67.0% 99.0% 99.0%

0.0% 20.0% 40.0% 60.0% 80.0% 100.0% 120.0%

Ac c e ss to inte rne t Ac c e ss to mobile de vic e s

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

56.7% 2.5% 32.5% 5.0% 0% 3.3%

74.5% 0% 24.5% 0% 0% 1.0%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% Iphone Blac kbe r r y Android Windows Don't know Othe r s

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%)

3/23/2018 8 PCs/ HPs with c anc e r

• r

e late d app on the ir mobile s

23.7% 76.3% 28.4% 71.6%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0%

Ye s No

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.

Whe r e do PCs se e k infor ma tion

 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 .

64.2% 5.1% 34.7% 31.8% 34.7% 8.5% 4.6% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% Inte rne t Soc ial Me dia Br

• c hure s

Publishe d L ite r atute F amily/ fr ie nds Don't se e k info Othe r Pe r c e ntage

FL2

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

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T ype s of soc ia l me dia use d by PC

 Ab o ut 69% o f PC use d so c ia l me dia fo r pe rso na l use , while o nly 28% use d it to o b ta in c a nc e r- re la te d info rma tio n.

59.0% 26.8% 10.9% 7.1% 1.6% 12.6% 7.7% 2.7% 0.6% 31.1% 15.6% 8.1% 0.0% 1.2% 0.0% 1.2% 0.0% 0.0% 4.1% 72.8%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0%

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

Pe r sonal use Canc e r infor mation

BDB3

Soc ia l Me dia use a mong HPs

 73.8% o f HP use d SM fo r pe rso na l use , while o nly 16.7% HPs use d SM fo r pro fe ssio na l use . F a c e b o o k is the pre fe rre d SM fo r pe rso na l use while L inke d fo r pro fe ssio na l use . Only fe w HPs o pte d to use twitte r.

51.0% 33.3% 31.4% 21.6% 9.8% 7.8% 2.0% 2.0% 5.8% 13.7% 2.0% 2.0% 2.0% 5.9% 25.5% 11.8% 0.0% 39.2%

0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0%

F a c e book Youtube Pinte re st Instag r am T witte r L inke d Doximity F lic kr None

Pe r sonal Use Profe ssional use

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

3/23/2018 10 Re asons why HPs don’t use SM for pr

• fe ssional use

31.9% 8.5% 27.7% 12.8% 4.3% 48.9% 42.6% 25.2% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% Pre fe r

• the r

me thods Unfamiliar with te c h Not inte r e ste d Doe sn't e nhanc e c ar e e r No financ ial be ne fits Privac y c onc e r ns L iability c onc e r ns No time Pe r c e ntage

 Mo st c o mmo n re a so ns HPs do n’ t use SM fo r pro fe ssio na l use inc lude lia bility a nd priva c y c o nc e rns a s we ll a s pre fe rring o the r me a ns o f c o mmunic a tio ns suc h a s pho ne a nd E MR.

FL8

Mode of c ommunic a tion pre fe rre d by PC

68.3% 18.0% 18.6% 2.7% 3.3% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% Phone E ma il E le c tronic porta l US ma il Me ssa g e s

PC

 68% o f PCs pre fe r pho ne c o mmunic a tio n o ve r e le c tro nic po rta ls/ e -Ma il (36%)

Slide 19 FL8 In these slides (and all the slides) can you show percentage instead

• f absolute number? What is the denominator of respondants?

Frederick Lansigan, 2/28/2018

3/23/2018 11 Wha t do HPs use to c ommunic a te with PCs

23.8% 1.0% 0.0% 2.0% 1.0% 49.5% 22.8% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% E ma il F a c e book T witte r Re ading and posting a r e ply on a blog Patie nt c ommunity E MR por tals (My DH) None Pe r c e ntage

 HPs pre fe r to use E MR po rta ls a nd e ma ils to c o mmunic a te with the ir pa tie nts/ c a re g ive rs. L e ss tha n 5% use so c ia l me dia to c o mmunic a te with the ir pa tie nts.

FL9

How ofte n HPs use pa tie nt por ta ls to c ommunic a te with PC

88.1% 11.9% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0% 0-50% 51-100% How ofte n do you use patie nt portals

 E ve n tho ug h in the pre vio us slide , E MR po rta l wa s the mo st pre fe rre d me a ns o f c o mmunic a tio n b y HPs, o nly 12% o f HPs use it fo r mo re tha n ha lf o f the ir inte ra c tio ns with PCs.

FL10

Slide 21 FL9 We assume phone calls are most common

Frederick Lansigan, 2/28/2018

Slide 22 FL10 Most HP do not use EMR patient portals

Frederick Lansigan, 2/28/2018

3/23/2018 12 Ar e PCs/ HPs inte r e ste d in se c ur e te xt- me ssaging syste m to c ommunic a te with e a c h othe r

 Ab o ut ha lf o f o ur pa tie nts (48.3%) a re inte re ste d in se c ure te xt me ssa g ing syste m to c o mmunic a te with the me dic a l te a m, while ha lf o f the HPs who re spo nde d a re no t inte re ste d o r unsure a b o ut se c ure te xt-me ssa g ing syste m to c o mmunic a te with the PCs.

48.3% 28.4% 23.3% 43.6% 16.8% 39.6% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% Ye s Not sure No

HP PC

FL11

Do PC visit the ir c a nc e r c e nte r’s re sourc e s

37.6% 2.8% 0.0% 3.9% 55.8% 0.0% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% We bsite F a c e book T witte r Youtube None of the a bove Pe r c e ntage

 55.8% o f o ur pa tie nts e xpre sse d tha t the y ha ve no t visite d the c a nc e r c e nte rs we b site o r so c ia l me dia site s

FL4

Slide 23 FL11 Half do not want a secure text messaging system with patients; half do.

Frederick Lansigan, 2/28/2018

Slide 24 FL4 55% (or xx%) of our patients did not visit our cancer center website or SM sites

Frederick Lansigan, 2/28/2018

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If not, the re a sons… .

35.9% 8.7% 32.0% 23.3% 0.0% 5.0% 10.0% 15.0% 20.0% 25.0% 30.0% 35.0% 40.0% I was not awar e of the se r e sour c e s I pr e fe r to use othe r SM/ r e sour c e s I don’t use SM/ inte r ne t Othe r s Pe c e ntage

 Mo st pa tie nt no te d tha t the y we re no t a wa re o f the se re so urc e s, c ho se no t to use the m o r did no t use inte rne t to ha ve a c c e ss to the se re so urc e s

FL5

Conc lusions

 L a c k o f e le c tro nic c o nne c tivity c a n iso la te o ur pa tie nt po pula tio n hinde ring e ng a g e me nt.  L e ss PC tha n HP ha d a c c e ss to the inte rne t a nd o wne d mo b ile de vic e s. T his ma y re fle c t the so c io e c o no mic sta tus o f pa tie nts in unde rse rve d rura l c o mmunitie s.  Ma jo rity o f the PCs a nd HPs with mo b ile de vic e s o wn iPho ne s.

FL12 FL13

Slide 25 FL5 this is because....

Frederick Lansigan, 2/28/2018

Slide 26 FL12 Frederick Lansigan, 2/28/2018 FL13 What was the story we told in our ASCO abstract? let's expand on that... This is a bit skimpy.

Frederick Lansigan, 2/28/2018

3/23/2018 14

 I n o ur g e o g ra phic a re a , F B is the mo st c o mmo nly use d SM pla tfo rm, fa vo re d

• ve r o the r site s suc h a s Yo uT

ub e a nd T witte r.  F

• r HPs, the mo st pre fe rre d pla tfo rm wa s L

inke din fo r pro fe ssio na l use , e ve n tho ug h the y pre fe rre d F B fo r pe rso na l use .  PCs wo uld like to se e a n inc re a se in c a nc e r-re la te d c o nte nt fro m the ir c a nc e r c e nte r, ho we ve r, the utiliza tio n o f c urre nt pla tfo rms is lo w. T he re is a n

• ppo rtunity to utilize SM to e ng a g e the c a nc e r c o mmunity in NNE

.

Conc lusions

3/23/2018 15 Ne xt Ste ps

 E nha nc ing so c ia l me dia visib ility b y pro mo ting o ur c a nc e r c e nte r F a c e b o o k pa g e a nd pro mo ting it thro ug h visua l me dia in the wa iting a re a s a s we ll a s during Pro uty  Ha ve re g ula r stre a ming o f F a c e b o o k L ive to sha re info rma tio n a b o ut ne w pa tie nt pro g ra ms, suppo rt g ro ups,  Ra ising a wa re ne ss a b o ut type s o f c linic a l tria ls a va ila b le a nd inc re a sing tra nspa re nc y fo r the pa tie nts

FL14 FL15 BDB7

Ne xt Ste ps

 Cre a ting F a c e b o o k inte re st g ro ups suc h a s e xe rc ise g ro ups o r suppo rt g ro ups fo r c a nc e r pa tie nts.  Our pa tie nts ha ve indic a te d tha t the y use s pa g e s suc h a s the Ca ring Bridg e fo r suppo rt. Ho we ve r, no t ma ny pa tie nts a re a wa re o r using the se we b site s.

FL14 FL15 BDB7

Slide 29 FL14 Make these more feasible projects. Which one will we take up next?

Frederick Lansigan, 2/28/2018

FL15 Frederick Lansigan, 2/28/2018 BDB7 jaime peyton

Bhavina DO Batukbhai, 3/2/2018

Slide 30 FL14 Make these more feasible projects. Which one will we take up next?

Frederick Lansigan, 2/28/2018

FL15 Frederick Lansigan, 2/28/2018 BDB7 jaime peyton

Bhavina DO Batukbhai, 3/2/2018

3/23/2018 16 Ne xt Ste ps

 Cre a ting a pa g e fo r mo st c o mmo nly se a rc h info rma tio n suc h a s ‘ die t a nd physic a l a c tivity during c a nc e r tre a tme nt’ , ‘ wha t is immuno the ra py’ a nd g e ne ra l info rma tio n a b o ut c o mmo n c a nc e r type s  Ask the e xpe rt: a llo w pa tie nts to po se the ir no n-urg e nt q ue stio ns

FL14 FL15 BDB7

Slide 32 FL14 Make these more feasible projects. Which one will we take up next?

Frederick Lansigan, 2/28/2018

FL15 Frederick Lansigan, 2/28/2018 BDB7 jaime peyton

Bhavina DO Batukbhai, 3/2/2018

3/23/2018 17

Ac knowle dg e me nt

NNE

COS fo r pro viding us with the g ra nt to pa rta ke this study a s we ll a s g iving us the o ppo rtunity to pre se nt o ur finding s to da y

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