SCI$U:'e$learning'for'patient'education'in'spinal'cord'injury'rehabilitation' Background'and'development'process' E$learning'in'patient'education'

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1 1 SCI$U:'e$learning'for'patient'education'in'spinal'cord'injury'rehabilitation' Background'and'development'process' John%D.%Shepherd 1,%Karla%M.%Badger5Brown 2,%Matthew%S.%Legassic 3,%Saagar%Walia 3,%Dalton%L.%Wolfe 3 1 RehabilitationEngineeringLaboratory,TorontoRehabilitationInstitute/UniversityHealthNetwork,Toronto,Ontario; 2 BadgerC BrownMedicalCommunications,Toronto,Ontario; 3 LawsonHealthResearchInstitute,London,Ontario,Canada ' E$learning'in'patient'education' EClearningistheapplicationofinformationtechnologytoeducation.Ithasthepotential toimprovetheeffectivenessandreachofeducationinitiativeswhilereducingcosts.ec learninghasbeenusedasaneffectivetoolforeducationaldeliveryincorporateand healthcareenvironments.incorporatesettings,eclearninghasbeenwidelyadoptedfor stafftraining.inhealthcare,eclearningiswellestablishedasasoundapproachfor medicaleducation(chumleycjonesetal.,2002),andisalsousedinstafftraining, particularlyforcompliancecrelatedtopics.inpatienteducation,applicationsofec learningaremorecommonlyfoundinlargerdiseasepopulations.studieshave demonstratedimprovedoutcomesinbothdiabetesandbreastcancerpatients(austin Borenetal.,2006;Gibbonsetal.,2009).Bybringinginformationtothepatientatthe placeandtimeoftheirchoosing,eclearninghasthepotentialtobroadenthereachof existingservicesandisapromisinginterventionforoutpatients(chouetal.,2012).itis possiblethateclearningcouldbeaneffectivemeansofdeliveringpatienteducationto peoplewithscibothintherehabsettingandinthecommunity.itiswelldocumented thattheinternetisapreferredmeansofaccessinginformationforpeoplewithsci(letts etal.,2011;hauberetal.,2002;burkelletal.,2006;matteretal.,2009;edwardsetal., 2002;Goodmanetal.,2008),andonestudydemonstratedthatasingleviewingofaneC learningprogramonpressureulcerpreventioncanimproveknowledge(braceetal, 2010). EClearningcanbeusedtocreateengaginglearningexperiences.Theuseofmultiple mediacanleadtohigherperceivedusefulnessandimproveduserconcentration(liuet al.,2009).additionally,presentationscombiningtextandspokenwordaremorehighly valuedbyusersthanthosecontainingonlytext(hoffmanetal.,2011;heinrichetal., 2012). ManySCIrehabilitationprogramsofferprintCbasedresourcesandclasses,butthese bothhaveimportantlimitations(hoffmanetal.,2011).eclearningoffersthepossibility ofeducationalinterventionsthataremoreengagingandeffectivethanprintresources, andmorewidelyaccessiblethanclasses.adultlearnersoftenhaveapreferencefor digitalmedia(smithcstoneretal.,2003),andeclearningpresentationscanbetailoredto fittheirattentionspanandvisualorientation.eclearninggiveslearnerstheabilityto controltheexperience(ruizetal.,2007).thisinteractivityenhanceslearner engagementandimproveslearningeffectiveness(zhangetal.,2006).

2 2 Designing'e$learning'interventions' WhendesigningeducationalinterventionsthattargetadultSCIpatients,itisimportant tobeinformedbyadultlearningtheory(mayetal.,2006). Autonomyisakey characteristicofadultlearners,andpatienteducationprogramsmustenhancepatient autonomyandempowermentinordertofacilitateselfcdirectedcare(kellyetal.,2009; Wolfeetal.,2004).ThismeanscreatinglearningexperiencesthatcanbeselfCdirected, whichisconsistentwiththedevelopmentofselfcmanagementskills.differentpatients havedifferentlearningstyles,andrequireappropriatelearningstrategies(chase,2001; Schubartetal.,2008);therefore,thedesignofeducationinterventionsmusttakeinto accountthedifferencesamonglearnersandengagemorethanonelearningstyle. Thechangingneedsofpatientsacrossdifferentsettingsrequireavarietyofmethods andmessengers,e.g.,differentmediaandmodesofinstruction(lettsetal.,2011). Ratherthanasinglemodeofinstructionoranuncoordinatedmixofmethods,theuse ofmultiplemethodsinstructuredformathasbeenshowntoenhancetheeffectiveness ofpatienteducation(cooperetal.,2001).forthepurposesofscirehabilitation,a blendedmodelofinstructionisthebestoption,combiningeclearningandother resourceswithincpersoninstruction(zhangetal.,2006).oneuserrequirementisof particularnote:patientswanttoseerealdepictionsofpeersineducationalprograms ratherthanactorsorhealthcareprofessionals,asthelatterlackcredibility(barnesetal., 2011).AstudyofYouTubevideosdesignedtosupportselfCmanagementinSCIshowed thatviewersfoundcontentmoreaccessiblewhentheywereabletoviewapeerdoing thetasktheywishedtoaccomplish(libinetal.,2011). Methods' SCICUwasconceivedoffromtheoutsetasacollaborationgiventheneedtoengage participantsfromacrossthecontinuumofcare.partnershipswereformedwith healthcareorganizationsprovidinginpatientscirehabilitationinontario(toronto Rehab,nowpartofUniversityHealthNetwork)andAlberta(GlenroseandFoothills Hospitals).TheseorganizationsagreedtomakeaninCkindcontributionofthetimeand expertiseoftheirclinicalstaff,whoparticipatedincontentdevelopmentworking groups.thesepartnersalsosubsequentlysupportedtheusabilitytestingandevaluation ofthecourses. Inordertoaccessexpertiseoncommunityintegration,wepartneredwiththe CanadianParaplegicAssociationOntario(CPAOntario),acommunityservice organizationservingpeoplelivingwithsci.communityserviceworkersparticipatedin theworkinggroups,asdidsomepeersupportstaff(whoaretypicallypeoplewithsci). Inaddition,thisorganizationhelpedidentifypeoplewithSCIforrecruitmentascontent workinggroupmembers(tocontributetheirexpertiseaboutlivingwithsci),video presentersandtestimonialsubjects. Finally,wepartneredwiththeLawsonHealthResearchInstituteinLondon,Ontario fortheevaluationcomponentoftheproject,focusingonthefirstthreecourses.

3 3 Design'' ThetargetaudienceforthecoursesispeoplewholivewithSCI,particularlyinthefirst1C 2yearsafterinjury.Therearealsoseveralsecondaryaudienceswhocouldbenefitfrom thecourses:familymembers,caregiversandhealthcareprofessionals.thegoalwasto supportselfcmanagementbyprovidinginformationanddevelopingproblemcsolving skills. Aneedsassessmentwasperformedinordertoinformplanningforseveralpatient educationinitiativesincludingscicu.eightycthreeconsumersand99cliniciansandstaff fromtorontorehabandcpaontarioparticipatedinthesurvey.commonissuesand themeswereidentified,andthisinformedthechoiceoftopicsforscicucourses. Tohelppublicizetheprojectandencourageuptake,abrandwasdeveloped, includinganame,alogoandamotto( Forhealthyliving ).Theprogramwascalled SpinalCordInjuryUniversity,orSCICU. ArapideClearningauthoringapplicationcalledArticulatewasusedtoproducethe courses.onebenefitofcoursesproducedwitharticulateistheclean,attractive, professionalclookinguserinterfacethatframesthecontentonthescreenandallowsthe usertonavigateandcontrolthecourses.thechoicewasmadetoallow(indeed, encourage)userstonavigatefreelywithinthecourses,ratherthanforcingthemtoview thecontentinaprescribedsequence. Theneedtoprovidevisualrepresentationsofkeyconceptswasaddressedby developingalibraryofmorethan200icons,usingsymbolicorstylizedrepresentations. Theiconscanbeusedtodesignatecomplicatedterms( autonomicdysreflexia is representedbyaspikingbloodpressuregauge)orsensitiveissues( bowelaccident is indicatedbyalargeexclamationpointsuperimposedonastylizedpairofbuttocks). Theseiconsareusefulforvisualreinforcementandwayfindingwithinthecourses. Development'process' TheSCICUcourseswereproducedusingafourCstepdevelopmentprocessasshownin Figure1:contentspecification;contentdevelopment;productionandpopulation;and finally,reviewandrevision.developingmultimediaeducationresourcesiscomplex, timecconsumingandexpensive,andrequiresthecoordinationofmanystakeholders (Elwynetal.,2011;Hawthorneetal.,2009).Typically,theexpertiseofvarieddisciplines isrequired,frommedicalresearchandscriptwritingtoinstructionaldesignandvideo production(ruizetal.,2007).thedevelopmentprocesswasdesignedtofacilitatethe collaborationofthesedifferentcontributors. TheprojectwasgovernedbyasteeringcommitteewithseniorClevelrepresentatives ofthepartnerorganizationswhometinitiallytoagreeonresourcecommitmentsand choosecoursetopics.thedayctocdayworkoftheprojectwascoordinatedbyaproject teamincludingprojectstaff(lead,projectmanagerandartdirector)andrepresentatives fromkeypartnerorganizations.theprojectteammetonaweeklybasisthroughoutthe project,overaperiodof12months. Contentdevelopmentwasundertakenbyworkinggroups,oneforeachcourse, comprisingsubjectcmatterexperts(smes)ofvariouskinds:researchers,clinicaland communityservicestaffandconsumers.projectteammembersledtheworkinggroup

4 4 meetingsandfacilitatedcollaborationbetweenworkinggroupmembers.teamsmet concurrentlyoncsiteatthetri/uhnlyndhurstcentre(whererehabilitationand communityserviceprofessionalsarecoclocated)andvirtually,usingawebconferencing service topermitcrossccountryparticipation. productionandpopulationofmultimediaassetsintothefinishedcourses wasundertakenbytheprojectteam,engagingtheskillsofspecialistsasrequired(video cameraandteleprompter,postproduction,etc).videopresenterswereselectedand coached,thenfilmedastheyreadthescriptfromateleprompter(essentialbecauseof thelong,detailedscript). Reviewandrevisionwasthelaststageofthedevelopmentprocessandincorporated qualitycontrol,usabilitytestingandmedicalreview. ' Testing'and'improvement' Coursedevelopmentincorporatedcontinuoustestingatallstages.Duringcontent development,theuseofawikicbasedcollectiveauthoringapplication(pbworks) enabledworkinggroupmemberstorespondtoeachothers contributionsasthescript wasindevelopment.attheoutsetandseveraltimesduringtheproductionand populationphases,designoptionswereevaluatedbyteammembersandproject participantsusingrapidprototyping. Abetaversionofthefirstcourse(containingthefirstsectionandafewquiz questionsandtabs)wasproducedforearlycstageusabilitytesting,lookinginparticular atissuesofaccessibilityandinterfacedesignwithapersonwithhighcleveltetraplegia, andeaseofunderstandingwithanoncnativeenglishspeaker. Eachcourseunderwentmedicalreviewtwiceduringthedevelopmentprocess. Beforeshootingthepresentervideo,eachscriptwasreviewedtoensureaccuracy, conformitywithbestevidenceandcomprehensiveness.asecondroundofmedical reviewfollowedtheproductionofeachcourse,focusinginparticularonthe illustrations,photosandothervisualelements. Results' ByusingthedevelopmentprocessshowninFigure1,theprojectteamwasableto coordinatetheactivitiesofmultipleparticipantstocreatefivecourses(thefirstthree wereevaluated).thefirst,called SCIandYou, isanintroductiontothephysicaland emotionaleffectsofsciandanorientationtotherehabilitationprocess.thenextthree (called Bladder, Bowel and Skin )coverimportantaspectsofbodyfunctionand selfccare.thelastcourse( Nutrition )givespracticalinformationonhealthyeatingto preventthesecondaryconsequencesofsci. Eachcoursecontainsapproximately15 slides arrangedinto3sections.eachslide coversaspecificissue,andfeaturesavideopresenterwhodeliversthetext.atthesame time,visualelements(illustrations,photosandanimations)illustrateandreinforcethe material,whileabulletcpointsummaryhighlightskeypointsfromthespokenscript. Slidestypicallylastfrom30secondsto2minutes. Inadditiontothedidacticmaterialcontainedintheslides,eachcourseincludesa numberoftabs,whichprovidedetailedinformationusersmaywanttoreferto(aword

5 5 list,arecipevideoorahowctoguideforaselfccareactivitylikedigitalstimulation).every coursecontainsawordlisttab,whichopensanillustratedsearchableglossaryofkey terms.additionally,allslideshaveasearchabletextofthepresentationscriptinthe Notes section. Followingeachsectionisaquiz,designedtorecapitulateimportantmaterialand reinforcelearning,ratherthanevaluateit. Thematerialineachcourseisdeliveredbyvideopresenters,whoareallpeopleliving withsci(eachsectionhasadifferentpresenter);thisenhancescredibility.special effortsweremadetoselectvideopresentersandtestimonialsubjectswhoreflectthe diversityfoundinthescicommunity,withrespecttoinjurylevelandtimesinceinjury, aswellasotherdemographiccharacteristics(age,sex,culturalbackground).inaddition tothevideopresenters,thereisavideohostforscicuoverall:aprofessionaltv journalistandpresenterwhointroducesandsummarizeseachcourse,andhelpsusers navigatebetweenpartsofthecourse. TheSCICUcoursesareverycontentCrichandmediaCrich.Eachcoursecontainsmore than45minutesoforiginalaudiovisualcontent,withhundredsofillustrations, animations,photosandvideos.thelargenumberofmediaassetshelpsmakethe coursesengagingandvisuallyappealing. TheextensiveuseofcustomCdevelopedillustrationsandanimationsmakesitpossible todepictthingsthatwouldbetoocostlyorimpossibletofilm;theycanshowcutaway views,blowupsandotherrepresentationsthatareusefulwhenshowinganatomical features.illustrationsandanimationscanbemadeasexplicitasisrequiredfor educationalpurposeswhileremainingtastefulandpleasanttoview. Anotherimportantfeatureofeachcourseisasetof25 testimonials; videoclips runningforabout2c3minuteseachinwhichpeoplelivingwithscidiscusstheirrealc worldexperiencesinawaythatreinforcesthepointscoveredinthepresentation.each coursefeatures3c5testimonials,whichdiscussparticulartopicsandareplaced immediatelyfollowingtheslideswherethosetopicsareintroduced. Discussion' Theaimofthisprojectwastopilotthedevelopmentofanonlinepatienteducation resource.thisinvolvedthedesignbothoftheonlinecoursesthemselvesandofthe processusedtodevelopthem.thebasicapproachwastoenlistaninstructionalmethod (eclearning)incommonuseinanothercontext(employee/stafftraining)andapplyitto therequirementsofpatienteducationinscirehabilitation.insodoing,wewereableto benefitfromtheuseofarelativelyinexpensiveandcommonlyusedsoftware application(articulate)designedforuseinthecreationofeclearningresources.we werealsoabletoadoptcertainpracticesincommonuseincommercialeclearning(such asstoryboarding). Foralmostallparticipants,thiswasanewandunusualkindofproject.Therewasa significantamountoflearningbydoing,meaningthatprogresswasinitiallyslowbut thatthereweresignificantgainsinproductivityastheteammovedthroughtheprocess. Althoughitistypicalfortheproductionofonlinepatienteducationresourcestobe outsourced(toamultimediaagency,forexample),wefounditwasveryhelpfultohave

6 6 allofthedisciplinesinvolvedineachstagerightfromthebeginning,withtheproject teamcoordinating.thereweremanyoccasionswheresubjectmatterexpertswereable toworkdirectlywiththeproductionteamtoensurethatvisualdetails(anatomy, mobilitydevices)wereaccuratelyrendered.byguidingtheprocessfromstarttofinish, theprojectteamwasabletoensurethatallaspectsofthecourses(language,design, images,usability)werealignedtocreateaneffectivelearningexperience. Whereverpossible,evidenceCbasedguidelineswereusedasthebasisforscript development.thecontentdevelopmentprocesswasmademorechallengingbythe needtoincludeagreatdealofinformationthatgoesbeyondwhatiscoveredby guidelines.withinthisdomainoftacitknowledge,theroleofthecontentworking groupswastoprovideinformedexperiencefromanumberofdifferentperspectives. Acrosstheboard,workinggroupmemberswereenthusiasticintheirparticipation.As rehabilitationprofessionalsandpatients,theywereabletoseethevalueinthiskindof resourceandwereexcitedbytheopportunitytoparticipateinaninnovativeventure. TheextensiveparticipationofpersonswithSCIinallaspectsofdevelopmentwasakey principlefromtheoutset.thisinvolvementwasnecessarytogeneratethecontent,in thatpeoplelivingwithsciareclearlysubjectmatterexpertswithrespecttolivingwith SCI.Italsohelpedshapethelanguageandappearanceofthecourses.Havingpersons withsciinvolvedatallstagesalsoprovidedacontinuousstreamofuserfeedback.it helpedgroundthecoursesintherealityofcommunity(ratherthanhospital)life;realc worldexamplesandtestimonialshelpedtoillustratelessonsthatwereconsidered relevantbyevaluationparticipants. Greatcarewastakentoensurethatthecourseswereattractiveandappealing,and thattheyprovideapositive,realisticimageoflifewithsci.illustrationsandimages helpedtoconveyimportantfactsandideas;theyalsohelpedpositivelyrecframeimages ofdisability. Overall,theworkundertakenthroughthedevelopmentprocessappearstohave resultedinthecreationofacredible,relevantandusercfriendlyresourcethatwillbe effectiveforpersonswithscitobetterunderstandtheconsequencesoftheirinjuryand selfcmanagetheircondition.thepreliminaryevaluationresultsareencouragingandwill beusedtoinformfuturedevelopmentoftheseandadditionalcourses. Conclusion' ThecoursesdevelopedforSCICUshowthepotentialforonlinepatienteducation. PreliminaryevaluationindicatesthattheyareappreciatedbyendCusers;further evaluationwillfocusonknowledgeacquisitionandretention.thecollaboration requiredtodevelopcontentwasessential,andwasfacilitatedbytheuseofittools.in particular,theextensiveparticipationofpatientswascrucial. SCICUdemonstratesapromisingapproach;furtherresearchwillneedtostudyhowto integratethiskindofresourceintoclinicalpracticeandhowtodriveconsumeruptake. Thisisadomainwheretechnologicalinnovationiscurrentlyhappeningatarapidpace, openingupnewpossibilities;futureworkwillneedtobeattunedtothese developments. '

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9 FIGURE 1 Phase Content Specification Players Steering Committee Project Team Working Groups Outputs or Deliverables Needs Assessment Clinicians/Staff Consumers List of Topics Professionals Presenters & Subjects Topic Selection Content Development Professionals Steering Committee Project Team Working Groups Presenters & Subjects Quizzes Tabs Multiple Revisions Script Medical Review I Working Groups Steering Committee Narrator video Storyboards Production & Population Project Team Animations Illustrations Professionals Presenters & Subjects Testimonials Elements Beta Course Working Groups Review & Revision Steering Committee Project Team Dev. Team Members Usability Testing Feedback Medical Review II Professionals Presenters & Subjects Online Course