Beyond tokenistic participation: Using representational artefacts to enable meaningful public participation in health service design

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ContentslistsavailableatScienceDirect

Health Policy

j o u r n al ho me p ag e :w w w . e l s e v i e r . c o m / l o c a t e / h e a l t h p o l

Beyond tokenistic participation: Using representational artefacts to enable meaningful public participation in health service design

Cecily Morrison

^a,∗

, Andy Dearden

^b,1

aEngineeringDesignCentre,UniversityofCambridge,EngineeringDepartment,TrumpingtonStreet,Cambridge,CB21PZ,UK

bUser-CentredHealthcareDesign,ShefﬁeldHallamUniversity,CantorBuilding,153ArundelStreet,Shefﬁeld,S12RU,UK

a rt i c l e i n f o

Articlehistory:

Received22November2012 Receivedinrevisedform8May2013 Accepted17May2013

Keywords:

Publicparticipation(PPI) Participatorydesign Representationalartefacts Olderpeople

Healthservices

a b s t ra c t

Anumberofrecentpoliciespromotepublicparticipationinhealthservicedesign.Yet,a growingliteraturehasarticulatedagapbetweenpolicyaimsandactualpracticeresulting inpublicparticipationbecomingtokenistic.Drawingontheoryfromparticipatorydesign, wearguethatchoosingappropriateartefactstoactasrepresentationscanstructuredis- cussionsbetweenpublicparticipantsandhealthprofessionalsinwaysthatbothgroups ﬁndmeaningfulandvalid.Throughacasestudyofaserviceimprovementprojectinoutpa- tientservicesforolderpeople,wedescribethreerepresentationalartefacts:emotionmaps, stories,andtracingpaper,andexplainhowtheyhelpedtomediateinteractionsbetween publicparticipantsandhealthprofessionals.Wesuggestthatusingsuchrepresentational artefactscanprovideanalternativeapproachtoparticipationthatstandsincontrasttothe currentfocusontheprofessionalisationofpublicparticipants.Weconcludethatincluding participatorydesignersinprojects,tochoseordesignappropriaterepresentationalarte- facts,canhelptoaddressthepolicy–practicegapofincludingpublicparticipantsinhealth servicedesign.

1. Introduction

Thereisastrongpolicydrivetoinvolvepatientsandthe publicinthedesignofhealthservicesforbothpragmatic andethicalreasons[1].IntheUK,forexample,theDepart- ment of Health’s report,Creating a Patient-LedNHS [2], highlightsthecontributionofpublicparticipationincreat- ingresponsive,patient-centredservices,whiletheNational HealthServiceAct2006[3]requiresthatservicesaremade

∗ Correspondingauthor.Tel.:+441223748245;fax:+441223332662.

E-mailaddresses:[email protected](C.Morrison), [email protected](A.Dearden).

1 Tel.:+441142256878;fax:+441142253161.

accountabletothepublicthroughconsultation,providing thepublicwithamechanismtoinﬂuencedecision-making.

Policiestoencourageparticipationinhealthservicedesign canbeseenacrossawiderangeofhighincomecountries [4].

Despite efforts to engender participation, there is a growingliteraturethatsuggeststhere isa gapbetween thesepolicyaimsandactualpractice[5].Currentpartic- ipationactivitiesprovidelittleopportunityforimpact[6], andwhentheydo,otherbarriersarise.Publicparticipants canfindit difficultto addtheirexperientialknowledge totheconversationandhavetheircontributionsconsid- eredlegitimatewithin adiscourse that isoftenfocused on specialised scientific knowledge [7,8]. The result is that although public participationis now embeddedin the structures that support healthcare, its role is fre- quentlytokenisticandthepublicareoftenunabletoaffect outcomes.

http://dx.doi.org/10.1016/j.healthpol.2013.05.008

Open access under CC BY-NC-SA license.

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Enablingmeaningful,asopposedtotokenistic,partici- pationthenrequiresﬁndingawayforpublicparticipants toexpressthemselvesandtheircontributionsthatisboth understandableanddeemedvalidbyhealthprofessionals whendesigninghealthservices.Wedrawupontheoretical constructsandpracticaltoolsfromtheﬁeldofparticipatory designtodothis.Inparticular,wefocusontheuseofrepre- sentationalartefactstostructurediscussionsbyproviding depictionsofcurrentsituationsorfuturedesignproposals inanappropriatelanguageforall.Inthispaper,weusea casestudytoshowhowrepresentationalartefactscanhelp tomovebeyondtokenisticparticipationinhealthservice design,andillustratehowtheapproachcouldbeusedto closeanimportantpolicy–practicegap.

2. Background

Public participation is a term that has been applied to a breadth of activities and philosophical stances, leading to much debate about its nature and purpose [9–11]andnumerousattemptstocharacteriseitsdiversity [12,13].Despite differencesintheoreticalor philosophi- calapproach, onthepracticallevel, publicparticipation remainstokenistic[12].Healthcareinstitutionsgothrough themotionsofpublicparticipation,butthescopeforpublic participantstoaffectchangeisoftenminimal[6,14,15].As theoppositeoftokenistic,wedeﬁnemeaningfulpartici- pationastheabilitytoimpactdecision-makinginhealth servicedesign settings.Below weconsiderthepractical challengesthatmustbeaddressedtoenablemeaningful participation.

2.1. Meaningfulparticipation

Thelevel ofpublicinvolvement hasbeencommonly characterisedbyaladderofparticipation,eachrungsigni- fyingtheamountofweightgiventothepublicvoice[16].

Furthertheorydevelopmentbroadensthischaracterisation toencapsulatethemutualexchangeofknowledgerather thanthatofa ﬁniteamountofpower,and drawsatten- tiontothe methods usedtosupport participation[17].

Theliteraturesuggeststhatconsultationisstillthedom- inantwaythatthepublicvoiceisheard,a methodboth lowontheladdersofparticipationandonethatdoesnot encouragearelationshipofmutualknowledgeexchange.

Meaningful participation then must support the estab- lishmentofrelationshipsthroughinvolving,collaborating with,orempoweringpublicparticipantsinsuchawaythat theycancontributetheirknowledge.

Onesystematicreviewfound300casestudiesthatdid provideopportunity for meaningful participation; however,manybarrierstoimpactingserviceswerediscussed [15].Publicparticipantsareoftenaskedtopartakeinactiv- itieswithhighlystructured, oftenopaque,protocolsfor communication,suchassittingonexecutiveboards[18].

Consequently,theyneedtocarefullydirecttheircommu- nication,suchastargetthechiefexecutive,orasonepaper describesit, ‘workthesystem,’ togettheirvoiceheard, [19].Yet,manypublicgovernorsstillfeelthattheydonot havetheskillstochallengeprofessionalsontheboard[20].

Publicparticipantscannottakeadvantageofparticipation

opportunitiesiftheydonothavetheskillstointeractinthe settingsinwhichtheyareplaced.

Lackofreceptivenesstothecontributionofpublicpar- ticipantsisanotherbarrierthathasbeenidentiﬁed.Some studiesdescribedsituationsinwhichpublicparticipation wasusedtolegitimatedecisionsthatorganisationswould havemadeanyway[15].Othershighlightingrainedpower differences in medical culture between evidence-based medicine and personal (and thus anecdotal) experience [6]. Although anecdotes were appreciated, when resourceswereallocated,argumentsframedin termsof evidence-based medicine had more sway. As a result, thecontributionofpublicparticipantswasoftendeemed invalidbythehealthprofessionalswithwhomtheywere interacting.

Thepublishedaccountsofpublicparticipationindicate thattheabilityofthepublictoparticipatecanbecompro- misedbytheverycontextswhicharemeanttoempower, suchasbeingadecision-makeronaboard.Accountsalso suggeststhatwhenacontributionismadebypublicpartic- ipants,itisnotalwaysdeemedcredibleduetotherelative valueplacedbyhealthprofessionalsonscientiﬁcknowl- edgeasopposedtopersonalexperientialknowledge.We would propose that achieving meaningful participation then requiresnotonly providingopportunitytopartici- pate,butalsofacilitatingparticipants’abilitytodosoby addressingthemismatchofknowledgebases.

Thompson et al. [21] report that the ability to par- ticipate is often achieved through professionalisation of public participants. They describe how experienced public participants put signiﬁcant energy into learning abouttherelevantscience,eithersurroundingtheircon- dition or the research methods, in order to enhance their communication with health professionals. Partici- pantsalsohighlightpreviousqualiﬁcations(e.g.amedical degree),orrecentlyacquiredones(e.g.trainingcourses), to legitimate the knowledge that they do have. These tendenciesarebeingsupportedthroughagreaterempha- sis on training and support for public participants in order to close what is perceived as a knowledge gap [22].

Whiletheprofessionalisationofpublicparticipantsmay providetheabilitytoparticipate,itraisesnumerousissues [12].First,itrestrictspublicparticipationtothosewhoor are willingand abletogain theseparticular newskills.

Second, the nature of the experiential knowledge that publicparticipationisthoughttoofferbecomesquestion- able,particularlyifthediversityofparticipantsislimited.

Third, scientiﬁc knowledge is maintained as the domi- nantparadigmagainstwhichtheexperientialknowledge ofpublicparticipantsmustbenormalised[21].Wewould suggestthereforethatthisapproachdoesnotenablemean- ingfulparticipation.

We propose that meaningful participation requires attentiontothespeciﬁcmethodsofengagementsothat theydonotdemandthatpublicparticipantsexpressthem- selves inunfamiliar ways in order tobeunderstood or consideredvalidbyhealthprofessionals.Inthenextsec- tion,wediscusshowtheﬁeldofparticipatorydesignhas addressedtheseissues boththeoreticallyandpractically withrepresentationalartefacts.

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2.2. Representationalartefacts

Participatory design is a ﬁeld that considers how to enablepeoplewithdifferentknowledgebasestocollabo- rativelydesignnewproductsandservices.Ithasahistorical focusoncomputersystems,tracingrootstothelate70sand early80swhentherewasdeepdissatisfactionwithcom- putersystemsthatwerepoorlymatchedtothecontextof use, andwidespreadfearsthatautomationwouldresult in lossofjobsand deskillingofemployees.Researchers workedtodevisenewapproachestocomputersystems’

designthatpaidgreaterattentiontothedetailedpractices ofuse,andsoughttoengageend-usersasmoreactivepar- ticipantsinthedesignprocesstoshapetheirownfuture [23].

Acommonthemeinparticipatorydesignistheneedto supportsharedunderstandingoftheexistingsituationand offuturedesign proposals.Thiscanbedonebycreating anappropriaterepresentationalartefact,anobjectthatis beingusedtorepresentthetopicofdiscussion.Everyday examplesincludemaps,diagrams,picturesandpropsused inrehearsingastageplay.Welldesignedrepresentational artefactscanbothembodythequestionsofspecialistsbut alsobeunderstoodandmanipulatedbypublicparticipants.

Regardless of form,appropriate useof representational artefactsreﬂectstheemphasisinparticipatorydesignon attendingnotonlytotheallocationofauthority,butalso tothemechanismsandmediumfordiscussingdesignpro- posals.

Thecollaborativefacilitationthatrepresentationalarte- factscanfosteriscapturedmostclearlyintheconceptof boundaryobjects[30].Aconceptoriginatingintheﬁeldof ScienceandTechnologyStudies,StarandGriesemer[31]

describeboundaryobjectsas:

...objectsthatarebothplasticenoughtoadapttolocal needsandtheconstraintsoftheseveralpartiesemploy- ing them,yet robustenough tomaintaina common identityacrosssites(ibid,p393).

Boundary objectsare a meansfortranslating understandings and meanings between different domains, differentlocations,andbetweendifferenttemporalpoints withinaproject.Boundaryobjectshelpgroupswithdif- ferent expertise and backgrounds to establish shared understanding.Asconcrete objects,theycan benamed, pointed to, and used by participantsin identifying and repairingbreakdownsincommunication[32].

Manyofthetheoreticalinsightsinparticipatorydesign, not surprisingly, identify languageas key to mediating interactionsandachievingmeaningfulparticipation.Ehn andKyng[25]highlightthatinteractionsinadesignset- tingcanbedescribedas a‘languagegame’inthesense ofWittgenstein[26].Languagegameshaveimplicitrules that governhowand when peoplecanspeakand what theycansay.For example, peoplehaveimplicit knowledge onappropriate ways tochatover coffee, but may belesscomfortablewiththerulesassociatedwithcom- municationinacourtroomorthatofadesignteam.Ehn and Kyngsuggest thatactive effortis neededtoensure design activitiesembodylanguagegamesthathave suf- ﬁcient resemblancetoones participantshave played in

thepast,sothattheycanlearnquicklyhowtojoininthe dialogue.

Representationalartefactsprovideonemechanismto establishlanguagegamesthroughthoughtfulconstruction anduse.Asabstractnotationsfordescribingsystems,rep- resentationalartefactsdrawattentiontosomeaspectsofa situationordesignproposal,andelideothers.Bråten[27]

highlightshowparticularrepresentationsofproblemscan entrenchand hidepowerdifferentials insocial decision settings.Using flowchartstomodelworkprocesses,for example,maydrawattentiontoquestionsofefficiencyof workflow,butdonotsupportdiscussionofthequalityof workinglife.Consequently,usingsuchtechnicalrepresen- tationsontheirowninfluencesthelanguagegamecreated.

Thiscannarrowthescopeofthediscussion, privileging managerialprioritiesoverthoseofworkers.

Ehn[28]exploreshowthepragmaticsofparticipation indesignareinﬂuencednotonlybythesocialnormsand practicesofverballanguagegames,butalsobytheformof therepresentationsused.Onekeyconcernisthefamiliarity oftherepresentationstothepublicparticipants.Unfamil- iaronescausetherepresentationtobecometheconscious focus, ‘present-at-hand’ (vorhanden), rather than a tool tosupportthe conversation,or ‘ready-at-hand,’(zuhan- den).Anotherconcernistheirphysicalformandproperties whichinﬂuenceswhoisabletoparticipateandhow[29].

For example, information written ona whiteboard is a representationthatmaybemoreamenabletogrouppartic- ipationthanthesameinformationprojectedontoascreen.

Participatorytechnologydesignershavealreadystarted to consider how to adapt these theories to the health domain.Examplesincludeworkingwithpeoplewithapha- sia [33], people with amnesia [34], and children with autism[35].In thecasestudy presentedbelow,partici- patorydesigntheoryisappliedtooutpatientservicesfor olderpeople.Weconsiderhowrepresentationalartefacts areusedtoestablishthelanguageofinteractionandenable meaningfulparticipation.

3. Casestudy

BetterOutpatientServicesforOlderPeople(BOSOP)was aoneyearserviceimprovementprojecttoidentifyareasin aparticularhospitalsettingthatcouldbeimproved,and toexplorepossiblesolutions[36].Duringthis project,a designteamusedparticipatorydesignmethodstoenable olderpatientsandstaffrepresentativestoworktogether todriveimprovements.Theapproachusedprovidedways togivevoicetothepatients’perspectivesaboutattending theoutpatients’clinic,andfacilitatingthemtotakepartin designingsolutions.Inthiscasestudywebrieﬂydescribe thedesignactivitiescarriedoutandthenreﬂectuponhow thechosenrepresentationalartefactsenabledmeaningful participation.

We drawupon a range of data collectedduring the project,includingaudiorecordingsofdesignevents,video snippets,proposalanddebriefdocuments,follow-upinter- viewswithallparticipants,andinterviewswiththedesign team. As a service improvement project applying the methodologyofexperiencebased design(EBD)[37] the BOSOPprojectwasnotconsideredaformofresearchbut

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Fig.1. Emotionalmap.

aserviceimprovementinitiative.Consequently,itdidnot requirereviewbyamedicalresearchethicscommitteein theUK.GovernanceforthestudyoftheEBD methodol- ogywascoveredbytheShefﬁeldHallamUniversityFaculty ofArts,ComputingEngineering&Sciencesresearchethics committee.

3.1. Designactivities

BOSOPbegan bygatheringpeople’sstories.Members ofalocalcharityvisitedolderpeopleintheirhomesand recorded their experienceof theirlast visit to hospital andanyotherstoriestheywantedtoshare.Thesewere transcribedandsharedwiththedesignteamtoprovidea startingpointforcreatingemotionalmaps,whicharevisual representationsthathighlightaspects ofpatientexperi- ence.Inthiscase,theemotionmapsshowedthesequence oftouchpointsthroughtimehorizontally,andillustrated thepositiveandnegativeemotionsofthepatient’sexpe- rienceofavisittooutpatients,orofa‘dayinthelife’ofa healthprofessionalagainstaverticalaxis,asseeninFig.1.

Twogroups,oneofpatientsandcarers(publicparticipants)andoneofhealthprofessionals,workedseparately duringa half-daysession tocreatetheirownmaps.The publicparticipants’session began with peopleretelling theirstories,whichpromptedfurtherstoriesanddiscus- sion.Participantsandfacilitatorsthenwroteincidentsand emotionalkeywordsdrawnfromthepatients’stories,onto

‘post-it’noteswhichwereplacedonthemapbelowthe touchpointtheywereassociatedwith. Thepost-itnotes werepositionedverticallywithstrongpositiveemotionsat thetop,andstrongnegativeemotionstowardsthebottom.

Forexample,onepost-itnotewhichsaid,“sleptinchair andclotheswaitingformorningambulance,”wasplaced underthetouchpoint,gettingtohospital,withanarrow tothewordanxiety.Thehealthprofessionals’sessionwas similar,butfocusedon‘adayinthelife.’

Theemotionalmapsprovidedatemporalcollationof the patients’ and health professionals’ experiences and concernsthatcouldbesharedwiththealternategroup.

In the session in which public participants and health professionals ﬁrst came together, representatives from each groupusedthe map toexplain theirperspectives, tellstoriesandsummarisetheirconcernsfordiscussion.

Fig.2.Peopleworkingaround“ARoad”map.

Followingthesharing,thepublicparticipantsandhealth professionalsjointlyprioritisedissuesforfuturedesignses- sions.Twoteams,eachinvolvingbothpublicparticipants andhealthprofessionals,thenworkedtogethertodesign solutions.Onegroupfocusedonissuesof‘gettingto’the hospital,andtheotherdealtwith‘arrivingat’thehospital.

Arangeoffurtherparticipatorydesignactivitiestook placeinthefollowingmonthstoaddresstheissuesraised.

Inthispaper,wewilldiscussonlyoneofthese,referredto asthe‘ARoad’project.Itbroughttogetherasmallgroup, includingapatient,ahealthprofessional,aroadengineer, and a designer, to explore optionsfor safer drop-off of patientsatthehospital.Thisgroupsataroundalarge(A0) sizemapoftheroadlayoutofthehospitalandsketched different solutions on tracing paper, bringing technical expertise and the stories into the conversation asthey proposedandnegotiatedpossibilities.Asnapshotofthis interactioncanbeseeninFig.2.

3.2. Enablingmeaningfulparticipation 3.2.1. Establishinganappropriatevocabulary

Opening the discussions in the BOSOP project with patientstoriesandrelatingthesetoemotionaltermsplaced onthemapemphasised theexperientialparts ofa visit tohospitalratherthan theclinicalactivities.Incontrast tospecialisedprocessrepresentationssuchasclinicalcare pathways, storiesand emotionalmapsprompted health professionalstothinkbeyondtheirpatients’physicalcon- ditiontotheiremotionalresponsesaswellastoconsider theirownemotionalexperiences.Indoingso,theproject implicitly establishedpatients’and health professionals’

personalphenomenologicalexperienceasavalidandrel- evantformofevidencetobeconsideredinthediscussion.

Theseexperiencescouldnotthenbeexcludedfromdis- cussionbyrhetoricalmovessuchasapejorativelabelling ofthoseexperiencesas‘(merely)anecdotal’,asdescribed in[6].

Thestoriesandthetermsappearingintheemotional maphelpedtobuildthisnewvocabularyofpatientexpe- rience. Firstrecordedin thehome,retoldtothepatient group, and then retold againto thehealth professional group,thestoriesweredeveloped,moulded,andsynthe- siseduntiltheybecamesymbolsrepresentingparticular conceptsforthegroup.Forexample,thestoryofonepar- ticipantwho wecallJane,anelderlyladywhofellafter

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beingdropped-offatthehospitalbyherdaughter,came torepresenttheneedtoaddressarrivaltothehospital.

ThefollowingquotationisapublicparticipantusingJane’s storyinoneofthelastdesignactivitiesintheproject,many monthsafterthestorywasﬁrsttold:

There’soneofthepatient’sstorieswhichwasabout.do youremember[Jane]...shefellbecauseherdaughter droppedheroutsideofA+Ebecausethecarparkwas full...It’snotjustaboutcarparking.It’saboutalackof drop-off.

Thestoriesandthetermsintheemotionalmapprovided astartingpointfordevelopingavocabularythatenabled publicparticipantstocontributeontheirowntermsand toindexbacktotheevidencebaseoftheirexperiencesin designdiscussions.

3.3. Givingpermission

The representational artefacts in the BOSOP project werepermissive.Storytelling,forexample,isalanguage gamethatthepublicparticipantswerelikelytohaveplayed inthepast.Theresemblance,alongwiththepromptspro- vided,allowedthemtodrawupontheirknowledgeofthis genretoquicklylearntoexpressthemselves.Asonepub- licparticipantsaid,“IknewtheoverallthingbutIdidn’t [know],butIsoonfoundoutitwas,youknowwasplentyof generaldiscussions.”Asarepresentationalartefact,stories couldbeready-to-handtobeusedindiscussions,differing fromalternativeprofessionalised representations,which would likely have been present-at-hand and absorbed moreoftheattentionthanthediscussion.

Material permissive cues were also present in the encountersetting.Thestorieswereﬁrstrecordedinpub- licparticipants’homes,aplacethatis bothfamiliarand oneoverwhichthepublicparticipanthascontrol.Creating similarcuesinamoreformal(university)settingrequired morethought.Theemotionmapactivitydidthisbyinviting peopletodiscussinsmallgroupswhosataroundcircular tableswithacasuallydressedfacilitatorbeforecontribut- ingtothemap.Participantscouldaddinformationtothe mapbythesimpleandfamiliaractionofwritingaword ona post-it note. Theuseof tracing paperplaced over theroadwaymapduringthediscussionsabout‘ARoad’

wassimilarlypermissive,asmarkingthetracingpaperdid notdefacetheoriginalmapthatmightbeunderstoodas

‘belonging’totheprofessionals.

3.4. Choosingthephysicalproperties

The persistence of the emotion map supported the designactivitiesinanumberofways.Bothlayparticipants and health professionals used it while presenting their stories,eachpersonpointingtodifferentpartsofthemap asshowninFig.3.Whengroupsbegantoprioritiseissues, theparticipantscouldremindthemselvesandeachother oftheimportantthemes.Onehealthprofessionalsaidin responsetoapublicparticipantraisinganissue,“ohyes, there werelotsof them[post-itnotes]for that,weren’t there.”Whenthelanguageofdiscussionturnedtoclinical themes, the facilitators used the map to re-focus the

Fig.3. Aparticipantusingtheemotionalmaptodescribeapatientstory.

conversationonissuesofpatientexperience.Persistence wasaqualityparticularlyimportantinthissetofdesign activitiesasit supportedthemaintenance ofthenewly establishedvocabulary.

Thesizeoftheemotionmapanditsplacementonthe wallawayfromtheconversationtablesallowedparallel, unfetteredaccessfor addingtothemap,andwhen dis- cussingthemap.Incontrasttoconversationsandmeetings, inwhichhealthprofessionalscandominatetheinteraction throughtheircommandoflanguage,andfamiliaritywith thestructureofmeeting agendasandreports, theemo- tionmapalteredthenormalturn-takingrules[38].Itdid notobligeothers’towaitforapersontoﬁnishordemand thateachturnrespondtowhatthelastpersonhadsaid.

Althoughmobilitystoppedsomeolderpeoplefromdirectly placingpost-itnotesonthemap,themajorityofpeople contributedasseeninFig.4.Inanactivitythatcouldhave beeneasilydominatedbystrongerpersonalities,thechoice ofthephysicalattributesoftheemotionmap helpedto equaliseinteraction.

3.5. Scaffoldingparticipation

Oncedesignactivitiesmovebeyondunderstandingthe currentsituationtoexploringfuturedesignproposals,they willinevitably requirea wider, and perhaps less famil- iar,vocabulary.Wellchosenrepresentationalartefactscan

‘scaffold’participation,inthesenseofprovidingsupports

Fig.4. Participantsputtingpost-itnotesontheemotionalmap.

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forinteractionand performanceasthenewlanguageis learned[39].Forexample,todeterminetheproblemsfor patientswiththecurrentout-patientservice,thestories oftheparticipantsneededtobecollatedandsynthesised.

Generally, this task takes considerable, oftenacademic, skill.Theemotionalmap,consistingofatimelinewitha seriesoftouchpoints,enabledsortingandsynthesisingof experiencetotakeplacewithoutparticipantsneedingto learntheterminologyoftouchpointsandpatientexperi- ence.Asthemapenabledalanguagegamethatparticipants couldengagewith,theypickeduptheseconceptsduring (ratherthaninadvanceof)theinteraction.

Likewise,ﬁndingasolutiontothedrop-offandparking issuesseemedbeyondthecapabilitiesofthegroup,and gaverisetoasenseofdisempowerment:

I’mcertainlynotanexpertinroadmanagement.SoIcan onlyseewhat’sthereandperhapshavesomethoughts aboutminorchanges.Youreallyneedsomeexpertsto lookatit.

Theuseofthelargemapandtracingpaperasrepre- sentationalartefactsscaffoldedthedevelopmentofanew languagegamethatallowedthegrouptoworkwithroad engineersand designersto solvetheproblem together.

The participants sketched out ideas, this becoming the languageofcollaboration.Eachparticipantthen applied theirexpertisetothepropositionathand.Thefollowing exchangetookplacebetweenapublicparticipantanda professionalinadiscussionaboutthecross-walktothe hospitalentrance:

Professional:Isthatthisonehere?

Publicparticipant: It affectspeople travellingbybus particularly.

Professional:Yes.youcomeacrosshere.

Publicparticipant:You’vegottheslopeupfromtheroad Thecontentof theconversationisnot remarkablein itself, but it allows thepublic participant to recall and communicate relevant and detailed experientialknowl- edge(inthiscasetheexperienceofsomeonearrivingbybus andclimbingthestepsorslopingpathtotheoutpatients’

entrance)attheappropriatetimewhentheprofessionalis consideringpossibleredesignoptions.

4. Discussion

Opportunitiesforthepublictoparticipateinthedesign ofhealth services atthehigher levels ofthe laddersof participation,commonlyinclude sittingontrust boards, attending researchmeetings,and inputting intoservice designsessions.Alloftheseactivitiesplacepublicpartici- pantsinthemiddleofexistinglanguagegames,whether they be clinical, managerial, or research. As considerable professional knowledge and experience is needed topartakeintheselanguagegames,manypublicpartic- ipants are unableto effectively use this opportunity to inﬂuence decision-making. We would suggest that the languagegameproblemaccountsforatleastpartofthe well-describedgapbetweenpolicygoalstoencouragepar- ticipationandthepracticalrealityoftokenism[5].

Professionalisationofpublicparticipantsthroughtrain- ing[21]iscurrentlynecessarytoenablepublicparticipants totakepartinthelanguagegamesusedinhealthservice design decision-making. This case-study illustrates that careful design of representational artefacts provides an alternativemechanismforfacilitatinglanguagegamesthat areaccessibletobroaderaudiences.Workbyotherpar- ticipatorydesignersextendstheseﬁndingstogroupsthat wouldlikelybemarginalisedintheparticipationprocess, suchasthosewithaphasia[33],amnesia[34],orchildren withautism[35].Collaborativeengagementinlanguage gamessuchasthoseusedinthisproject,alsohasthepoten- tialtoalterprofessionalandmanagerialrelationshipswith patients,carersandotherrepresentatives,afactorthathas beenidentiﬁedasimportantforachievingorganisational change[14].

We would also argue that representational artefacts playanimportantroleasboundaryobjectsbetweenpub- licparticipantsandhealthprofessionals.Theycanbecome persistentcollaborativeobjects,takingonnewmeanings whenusedindifferentsettings.Forexample,theemotional map was‘plastic’ enoughtomake iteasyfor thepublic participantstocontributetoandedit.However,itwasalso sufﬁcientlystructuredandstablethatitcouldbeemployed laterin discursivedecisionmaking,andincommunicat- ingwithotherstakeholderswhowerenotinvolvedinits creation.Considered inthisway,usingappropriate representational artefactsnotonlyreducesthepressurefor professionalisationofpublicparticipants,butalsoreduces pressure forde-professionalisationof healthprofession- als. Instead it providesa mechanism that enables both partiestocollaboratedrawingontheirownfamiliarlan- guagegames.

Thedetailofourstudypointstofourcharacteristicsof therepresentationalartefactsusedthatengenderedpar- ticipationinthissetting:

•Theyestablishedandmaintainedanappropriatevocab- ularythatretainspatientprioritiesratherthanorganisa- tionalonesindiscussions.

•Theygavepermissivecuesforpatientstoparticipate.

•Theirphysical properties, inthis case persistence and size,activelyencouragedequalparticipation.

•They scaffolded interactions with experts, to enable meaningful participation in complex health service designactivities.

Whilewewouldnotexpectthecharacteristicstostay thesameindifferentsettings,theydodrawattentionto theimportance ofconsideringthe characteristicsofthe representational artefact in detail. As Oliver et al. [13]

note,existing literaturerarelyreportsin detailthespe- ciﬁcmethodsusedincollectivedecisionmakinginpublic participation.Thoseauthorsthatdospecifythedetailof theirdecisionmakingmethodsoftendonotreportonthe representationalartefactsusedinthediscourse,focusing primarilyonverbalortextualinteractions(seeforexample [40]).Wewouldsuggestthatthelackofcurrentdiscourse aboutthedetail ofmethod,andmorespeciﬁcallytothe representationalartefactsused,missesanopportunityto considerwaystoaddressthecurrentpolicy–practicegap.

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Attentiontothecharacteristicsoftherepresentational artefactraisesthefurtherquestionofwhatkindsofrepre- sentationalartefactsareappropriatetothepublicvoice(s).

Ithasbeennotedthatprofessionalisedpublicparticipants oftenmovefromafocusontheirexperientialknowledge to a discourse located within the knowledge paradigm of science [21]. Those organisations that facilitate public involvementmightwant toconsiderdrawingonthe

‘collectiveresource approach,’[41] which proposesthat organisations shoulddevelop theirown understandings andlanguagesfordiscussingnewpropositions,toensure thatissuesandvaluesthatareimportanttothemarenot implicitlyexpungedfromdebates.Suchanapproachwould speaktothecallforsuchmediatingorganisationstocon- tinuetodeveloptheirmethods[42].

Inthispaper,wehavehighlightedtheimportant,but oftenunrecognised,rolethat thecareful constructionof representationalartefactsfordiscussingcurrentandfuture designproposalsplaysinenablingmeaningfulparticipa- tion.Indoingso,wedonotwanttosuggestthatchoosing suitable representationalartefacts is sufficienttoensure meaningfulparticipation.Itremainsthecasethatatten- tionmustbepaidtothespecificandeverchangingpolitical landscape in which participationis embedded[12],the broadmosaicofrelationshipsthroughwhichparticipation in decisionmakingtakes place[12,17]and thatspecific strategies arerequired toaddressthese factors,e.g.the inclusionstrategiesproposedby[40].

Thecreationorchoiceofappropriaterepresentational artefactstomeetthegoalsofaparticulardesignactivityor encounterisoneofthecentralmethodologicalconcerns of theﬁeld of design, particularly participatory design.

A participatory designer could,for example, workwith publicparticipantsand/orhealthprofessionalstodevelop representationalartefactsthatsupportavocabularythat reﬂectedbothgroups’priorities.Wesuggestthatinclud- ingparticipatorydesignersinprojectscouldsupportmore meaningful publicparticipationinhealth servicedesign andimprovement andaddressimportantaspectsofthis policy–practicegap.

Sourceoffunding

This article presents independent research commis- sioned by the National Institute for Health Research (NIHR)undertheCollaborationforLeadershipinApplied Health Research and Care (CLAHRC) programme for Cambridge and Peterborough and South Yorkshire. The viewsexpressedarethoseoftheauthorsandnotneces- sarily thoseoftheNHS,theNIHRortheDepartment of Health.

Conﬂictofinterest

None.

Acknowledgements

Better Outpatient Services for Older People (BOSOP) was funded by NHS Shefﬁeld. We acknowledge the valuable contributions of all the staff, patients, carers

andadvocateswhoparticipatedinBOSOPaswellasthe support of Shefﬁeld Churches Council for Community Care(SCCCC)intheBOSOPproject.Wewouldalsoliketo acknowlegeJillThompson’sinsightsonearlierdrafts.

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