JOTAYLOR&DRAMIRHANNAN

Harnessingthepowerofsocialmediainraisingbreastcancerawareness

ThePlan

•  MyhistoryandtheABCDidea

•  Benefitsofonlinecommuni?es•  Difficul?es•  Recommenda?ons

MyHistory

•  38whendiagnosedwithbreastcancer,•  HUGEshock,nooneinfamilyhadit•  Marriedwith2youngchildren,•  Daughter5months,son2½yrs

hLp://www.abcdiagnosis.co.uk/index.php/about-me/2013-02-13-04-18-53

MyHistory•  Mastectomywithimmediatereconstruc?on(LDflap)•  6cycleschemo•  4weeksradiotherapy•  1yearofHercep?n,Tamoxifenfor5yrs&lastlyZolodexfor2½yrs&IfinishedthisinFebruary'12

hLp://www.abcdiagnosis.co.uk/index.php/about-me/2013-02-13-04-18-53

PhotoshootwithREDmagazine“friendsandsharingexperiencesofyoungerwomenwith

breastcancer”

•  Fuelledideaforwebsiteresourcefornewlydiagnosedpa?ents

•  Onestopshop•  Everythingbreastcancer•  Thedreamstayedanideaun?l2012•  Finallylaunched15thFebruary2013,my6thAnniversary

aaermyownbreastcancer•  Informa?ontohelppa?entsmakeinformedchoices,website,

socialmediaTwiLerfeed,Facebook•  Worldwide

AnIdea!

Lightbulbmoment

•  Tips,informa?onandanswerstohelpthemmakedecisions•  Linkstootherresources•  NHSCancerNetworks,consultants•  Informa?onaboutnewbreastcancertreatmentsanddrugs•  Exchangeinforma?on-wearefirmbelieversin"knowledgeispower"

Impact

•  On-linecommunity•  TwiLerchat#BCCWW@BCCWW(everyTuesday9pm-10pmGMT)

•  Allrelatetoeachother•  “FoundyourwebsiteviaTwi3erit’sagreatresource”

@Alis380•  “Lovewhatyoudo,supporBveandpackedfullofinformaBon”

@hellboy8700•  “I’msharingyoursiteonmyFBpageasit’s

amazing”@YvonneNewbold

Impactonmyowntreatment

•  KnowledgeablePa?ent– Tamoxifen:changedregimedueto#SDBCS13–  Infoaboutnewchemoregime#SDBCS14– Leadtomyowndiagnosisofsecondarybreastcancer

– ChangingOncologist– Helpedtoinfluencemetomakemyowndecision– Powerofsocialmedia!

ABCDandme:todayandtomorrow

•  over6500TwiLer•  over700onfacebookpage•  Collabora?onswithpa?entsandprofessionals•  Currentlyinremission•  60milebikeride&raisednearly£5kforTheChris?e•  3weeklyregimeofdrugs

ABCDandme:todayandtomorrow

•  GrantbeingappliedformaybecrowdfundingforBreastreconstruc?onapp

•  FeaturingonyogaDVDforbreastcancerpa?entsduetotwiLercontact

•  InvitedbyCRUKandChris?estonewMCRCbuilding•  Lookingatprovidingaretreatforpa?ents/survivors•  Furthercollabora?onswithprofessionalsduetonetworkingandSoMeinvolvement

Challenges

•  Time–SoMeisaveryinvolved•  Money•  Convincingprofessionalsofmyknowledgeandabilitytomakedecisionsaboutmyowndisease

Recommenda?ons

•  Forotherpa?ents–  Don’tbescaredofsocialmedia:joinintheconversa?on–  Joinsupportgroups(face-to-faceoron-line)–  Seekoutrelevantinforma?on–  Don’tbeafraidtodiscussyourcondi?onandop?onswiththehealthprofessional

•  Forhealthprofessionals–  Don’tbescaredofsocialmedia:joinintheconversa?on–  Don’tbedismissiveofyourpa?ent’sideas,trytounderstandthem

www.htmc.co.uk @amirhannan @htmc0

http://tinyurl.com/pyjv3wq

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TwiLer@abcdiagnosis