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
FacebookhLps://www.facebook.com/abcdiagnosis
www.abcdiagnosis.co.uk
TwiLer@abcdiagnosis