Transforming clients into experts-by-experience

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Contents lists available atScienceDirect

Health

Policy

j o u r n a l h o m e p a g 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

Transforming

clients

into

experts-by-experience:

A

pilot

in

client

participation

in

Dutch

long-term

elderly

care

homes

inspectorate

supervision

M.B.

de

Graaff

a,∗

_,

_A.

_Stoopendaal

a

_,

_I.

_Leistikow

a,b

a_Erasmus_School_of_Health_Policy_&_Management,_Erasmus_University_Rotterdam,_P.O._Box_1738,₃₀₀₀_DR_Rotterdam,_the_Netherlands b_Dutch_Health_and_Youth_Care_{Inspectorate,}₃₅₂₁_AZ_Utrecht,_the_Netherlands

a

r

t

i

c

l

e

i

n

f

o

Articlehistory: Received2July2018

Receivedinrevisedform20October2018 Accepted12November2018 Keywords: Expertsbyexperience Elderlycare Inspectoratesupervision Organizationalethnography

a

b

s

t

r

a

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t

Asexperts-by-experience,clientsarethoughttogivespecificinputforandlegitimacytoregulatorywork. Inthispaperwetracka2017pilotbytheDutchHealthandYouthCareInspectoratethataimedtouse experientialknowledgeinriskregulationthroughengagingwithclientsoflong-termelderlycarehomes. Throughanethnographicinquiryweevaluatethedesignofthispilot.Wefindhowthepilottransforms selectedclientsintoexperts-by-experiencethroughtrainingandsitevisits.Inthistransformation,clients attempt,andfail,tobringtotheforetheirdefinitionsofqualityandsafety,negatingtheirpotentially specificcontributions.Paradoxically,intheirattemptstoexposevalidnewknowledgeonthequality ofcare,thepilotconstructstheexperts-by-experienceinsuchawaythatthisknowledgeisunlikelyto beopenedup.Concurrently,wefindthatintheirattemptstohavetheirinputseenasvalid, experts-by-experiencedownplaythevalueoftheirexperientialknowledge.Thus,weshowhowdominating, legitimatedinterpretationsof(knowledgeabout)qualityofcareresonateinexperimentalregulatory practicesthatexplicitlytrytomovebeyondthem,emphasizingtheneedforapragmaticandreflexive engagementwithclientsinthesupervisionoflong-termelderlycare.

1. Introduction

Client participationin the supervision of quality and safety ofcareis notanewidea.For atleasttwodecades, experts-by-experience,orlay-inspectors, have beenidentiﬁedas providing addedvaluetotheprocessofinspection-particularlytheworking oftheteam[1].Anexpert-by-experienceisperceivedasaperson whoisin-betweenthe‘life-world’ofclientsandthatofthe‘system’ of professional inspectors and policymakers [2]. An expert-by-experienceisthoughttobeabletobridgethisin-between,liminal, spaceinordertoenhancethequalityandsafetyofcare-either directlythroughparticipatingincarepracticesormoreindirectly through regulatory work. Experts-by-experience are trained in articulatingpracticalexperiences,throughundergoingcare them-selvesandthroughpeer-contact,intheirinteractionswithhealth careproviders,expertsandotherclients[3].Theiraddedvalueto supervisionhas,similarly,beencriticized[4,5].Theuseof experts-by-experiencecanlead toconfusionand distract from‘actually

∗ Correspondingauthor.

E-mailaddress:degraaff@eshpm.eur.nl(M.B.deGraaff).

empower[ing]thepeopleusingtheservicesbeinginspected’([6], p.1901).Nonetheless, clientsareexceedinglyvalued by inspec-toratesfortheirpracticalwisdom[7,8],andasigniﬁcantproportion of(Dutch)clientsappeartowanttosharetheirexperienceswith inspectorates([9],p.12).

Inthispaper,wefocusonanaturalexperimentwith experts-by-experienceinhealthcaresupervisionin theNetherlandsthat intendedtoopen-upnewperspectivesonthequalityandsafetyof longtermelderlycaredelivery.Wespentayeartrackingapilotby theDutchHealthandYouthCareInspectorate(Inspectie Gezondhei-dszorgenJeugd:IGJ)withtheuseofexperts-by-experienceinthe riskregulationoflongtermelderlycarehomes.Ourethnographic evaluationfocusedontheinformationaboutqualityofcareand qualityoflifeprovidedbyexperts-by-experiencesinthe experi-ment.Forthispaper,webroadenthisscopeanddiscusshow,and whatkindof,knowledgeisbeingproducedandlegitimatedthrough theuseofexperts-by-experienceasanexperimentalinstrumentof healthcaresupervision.Thus,wefocusonthe(un)intendedeffects ofthemethodologythatwasusedbytheregulatorinthisparticular naturalexperiment.

TheIGJhasbeeninspiredbyprojectsintheUK(CQC)and moti-vatedbysocietalandpoliticalattentiontoincludepatients,clients

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andcitizensinitsregulatorywork[10–13].TheIGJ alreadyhas experiencesinincludingcitizensininstitutionalreviews[7]and iscontinuouslyexperimentingwithnewformatsofparticipation. Recentprojectsinlong-termelderlycarehomesinvolvetheuse of‘mysteryguests’thatwashelpfulinraisingamultiple perspec-tiveonelderlycare,butthemethodsusedinthoseprojectsraised particularethicalissues[14,15].Thepilotwestudyherehas explic-itlybeensetupasafollowuptothesepreviousprojects.Again, theaimistodiscoverawaytoincludecitizensinorderto bet-terexplicateandutilizeclients’perspectivesonqualityofcarein ordertoimproveregulatorywork,legitimatedecision-making pro-cessesandenhancethepublic’simageof,andtrustin,theIGJmore generally([7],p.5).

Thesehighhopes,andaconcurrentsenseofurgency,toinclude clients’perspectivesintheregulationofcarefitwellwithanage inwhichwecannolongertaketrustininstitutionsfor granted [16,17].Furthermore,itcorrespondswithanauthoritarianformof populismthatisgaining ground,which viewsthepeopleasthe ‘truesourceofmoralauthority,andhenceoflegitimatepolitical authority’([18],p.312).Inthislatterrationaleofgoverning, legit-imatedknowledgeisthe‘knowledgethat‘everyoneknows’–that comesdirectlyfromtheexperienceoftherealpeople,undistorted, unmediatedbyexperts’([18],p.314).Suchnotionsoflegitimate knowledgedeviatefrommoretraditionalvaluationsofknowledge thatrelyonexpertiseandexpertswhoaremostlyprofessionals,a statusacquiredthroughspecific,controlledandprotected knowl-edge[19].Laypeople,citizensandclientswereeffectivelyexcluded fromthisknowledge,thusmaintainingthatstatus.Despiteclients co-producingcare [20], and techniquessuchas shareddecision makingaimedatclosingthepower-differential,processesof in-andexclusioncontinuetoemergewithmanyparticipatory meth-ods [21,22]. Experts-by-experience are especially vulnerable to critiquesontheparticularityandvalidityoftheirknowledge([6],p. 1893),astheirexpertisehingesonthearticulationofparticular sub-jectiveexperiencesofcaretowhichtheirtrainingisalsodirected [5].Forinstance,inspectorsmightexperiencedifficultiesin work-ingwithexperts-by-experience’sinput,aspreviousprojectsshow inspectorstofindsuchknowledgetobe‘inconsistent,incomplete and/orincorrect’([14],p.827).

Hence,weanalyticallydistinguish-crudely-twolegitimated epistemologiesonqualityandsafetyofcarehere:onevaluesthe ‘people’, and in doing so foregroundssubjective and experien-tialwaysofknowingwhile,generally,excludingdifferingvalues, histories and identities[18];the othervalues the‘professional’ rationalizedexpertand,indoingso,favorstheobjectiveand mea-surableaspectsofknowing.Inthispaper,wetracethetensions betweenthesetwolegitimatedwaysofknowinginacontextin whichanexpliciteffortismadetobringthe‘people’intothemore expert-centeredpracticeofhealthcaresupervision.

2. Method

Thepilot‘Expertsbyexperience’oftheIGJranfromOctober 2016toJanuary2018.DuringthistimetheIGJworkedtoletseven expertsbyexperienceparticipateintwentyregularsitevisitsto Dutchlong-termelderlycarehomes,thesevisitshappenedinthe summerof2017.Wewereaskedtoconductanevaluationstudyon thispilot.Theresearchwasdoneasanindependentevaluationand ourresearchcommencedafterthepilothadformallystarted.This meansthatpriortothestartofourresearch,theIGJalready com-pletedtheplanningandcontentofthepilotandthepreparations for theselection and training of seven clientsinto experts-by-experience.In ordertofollow thepilotof theIGJ and discover thewaysinwhichknowledgewasproduced,wehaveoptedfora focusedorganizationalethnography[23]thatincludesparticipant

Table1 Overviewdata.

Observations 52hoursofobservation

Projectmeetings 23(10x) Trainingsessions 10(2x) Sitevisits 16(4x) Conversationsclients/experts-by-experience 3(8x) Interviews 41respondents Experts-by-experiences 7(2x) Test-expert-by-experiences 2

Projectteammembers 4

Inspectors 4

Clients 13

Boardmemberscarehomes 5

Managerscarehomes 4

Otherstakeholders 2

Documents 232documents

Conceptreportsinspections 20

Finalreportsinspections 20

Notesexperts-by-experiences 40

Testreportspilot 4

IGJdocuments 120

Media(online,newspapers,television) 28

observations,semi-structuredinterviewsanddocumentanalyses (See

Wedirectly observeda totalof 52hofIGJ projectmeetings, trainingsessionsandfoursitevisits(4outofthe20)tothehomes forelderlycareunderreviewwhereexperts-by-experience accom-paniedtheinspectorsoftheIGJ.Duringthesitevisitswefocused ontheworkoftheexperts-by-experienceandobservedthemwhile theyinterviewedclientsortriedtogetanimpressionofthedaily carepractices.Weconductedinterviewswith41respondents(see Table1foranoverview)inordertounderstandparticipants’ expec-tationsandexperiencesofthepilotinordertofullygrasptheﬂow ofthepilot.Thedocumentanalysisfocusedonthecomparisonof thecontentofnotesoftheexperts-by-experiences andthe for-malreportsthatwerewrittenbytheinspectors.Otherdocuments servedtocontextualizetheothersourcesofdata.

Duringandafterourobservations,detailednotesweremade digitally.Interviewswererecordedandtranscribedverbatim.Data wasmanagedandanalyzedusingAtlas.tisoftware.Thedocuments, formalreportsandnotesoftheexperts-by-experience,were inten-sivelyanalyzedthroughaninductivecodingofthematerial(ﬁnal coding-schemeisavailableuponrequest)[24].Thenotesofthe observationsandtheinterviewtranscriptsweremoreselectively analyzedwitha focusontheconcrete practicesthrough which knowledgewasproducedinthispilot[25,26].

Ethnographyinvolvestheneedtostrikeabalancebetween in-depthobservationsandinterviewsandmoredistantanalytics.In thisresearch,suchdepthwasreachedintheinitialphasesofthe researchwhenweweregrantedthenecessaryaccesstotheIGJ, heremployeesanddocumentationandwereinvitedtoallrelevant meetingsandvisits.Duringthelaterstagesoftheresearch,more distancewasmaintained.Wehavestrengthenedthevalidityofour findingsthoughinformalmembercheckinswiththepilot project-leaderandformalmembercheckinswiththepilotprojectgroup asawhole;furthermore,ourfindingsweresupportedbya presen-tationofpreliminaryfindingstoawideraudienceattheIGJand, importantly,throughanadvisorycommitteeexistingof indepen-dentexperts(ofcitizenparticipationandlongtermcare,andthe inspectorate),whichassistedin substantiveandmethodological questionsinthreemeetings.

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3. Results

Wediscussourresultsinthechronologicalorderinwhichthe pilotunfolded,beginningwiththestartofthepilot,followedbythe sitevisitsandthereportsandaccountsthatwerewritten. Through-out,wefocusontheconcretepracticesthatshapedtheknowledge producedbytheseparticularexperts-by-experience.

3.1. Startofthepilot

TheIGJ draftedthefirstplansforthepilotin2015.Thepilot waspartofabroaderprojectaimedatimprovingthesupervision ofelderlycare.Theprojectteamwasrunbyanexperiencedproject leaderandconvenedabouttwotimeseachmonth.Theteamwas responsibleforthepreparationandexecutionofthepilot,which raninthesummerof2017;inparticular,theselectionandplanning ofthevisitsandthelogisticsofthepilotprovedtotakeasignificant amountoftime.Oneofthefirsteffortsoftheteamwastodevelopa clearprofilefortheclientstobeselectedasexperts-by-experience, resultingintencriteria,asshownintheirdocumentation:

Inthepasttwoyearsofexperienceasclientorﬁrstpersonof contactincarehome;

Isabletotravelindependentlytovisitcarehomes;

Isvitalenoughto,nexttotravelling,alsobeabletomaintaina conversationandwriteareport;

Isavailablefor5visitsin4months; Isﬂexible;

Isabletohavebriefconversationswithclientsofelderlyhomes andwriteabriefreportabouttheseconversations;

Isabletoobservewellinacarehomeandwriteabriefreport abouttheseobservations;

Can adequately and affably deal with possibleresistance of clientsand/orpersonnel;

Ispreparedtoworkfollowingcurrentrulesandregulations; Ispreparedtosubmitaformalstatementprovingproper behav-ior.

About400peoplerespondedtothecallforparticipantstoan existingpanelof23,000patientsand clientsintheNetherlands (ZorgpanelPatientenfederatieNederland).Fromthese400people, sevenclientswereselectedtobe(come)theexperts-by-experience inthispilot,includingthreewomenandfourmen.Allwerehighly motivated:

‘R:Whenthe questionwas askedtoparticipate, I wasvery enthusiastic,becausethequestionintriguedme.The Inspec-toratewhoadmitstohavelimitedreachwithitswork,andthat theymissedthesocialdomain...Seeingthataspectissovery important,Ijustjumpedin.’

[Expert-by-experience3,Interview1]

Allexperts-by-experienceinthispilotsharedthismotivationto helpimprovethequalityoflife(‘thesocialdomain’)incarehomes. Theselection-processensuredthatallexperts-by-experienceare verballystrong,well-acquaintedwiththeDutchhealthcaresystem andactivelyinvolvedinthissystemeitherthroughinformalcareor patientorganizations.Twoexperts-by-experiencehaddirect per-sonalexperienceinlong-termelderlycarehomes,andtheotherﬁve experts-by-experienceprovidedinformalcare.Thus,theuseofthe tencriteriabytheteamexcludedmost(former)clientsofelderly homesfromparticipation.Fromourﬁrstinterviewsitemergesthat existingexperiencesincareoftheexperts-by-experienceproved

Box 1: Themes as provided on the reporting form. Living environment: Atmosphere, decor (room/apartment

and common areas), facilities (e.g. internet, newspaper, tele-vision), facilities (e.g. bathroom, toilet, restaurant, sports), hygiene, level of privacy, etc.

Daily life: Activities/daytime activities (inside and outside the

home), opportunities for mutual contacts and visits, level of freedom in daily routine/activities, house rules, etc.

Care: Coordination and fulfilling care appointments by health

care providers, treatment by health care providers, feeling of safety, where to go for questions/problems, etc.

extensivebutalsoverymuchinfluencedbydebatesinDutchmedia onthequalityofelderlycare.Theselectionprocessfinishedwhen theexperts-by-experiencetooktheoathas(unpaid)publicofficials, whichgavetheexperts-by-experienceaformalstatus.

Thetrainingfortheexperts-by-experiencewasprepared exten-sively.Overtwo days,theywereintroducedtotheworkof the inspectorate,thepilot,andtheartofobservingandinterviewing clientsbyaprofessionaltrainertheIGJhiredforthepurpose.The firstdayoftraining emphasizedexperts-by-experience’s profes-sionalrolesaspublicofficials,suchastheirneedforconfidentiality, and forty-five minutes were spent on training them in obser-vational skills,duringwhich theimportance oftheneutral and objective observation of the situation in a home was stressed. Theseconddaywasmoreintensiveandwasprimarilydevotedto interview-skillstrainingwithanactor.Timewasalsospentonhow todealwithacarehomeclients’emotions.

Atthisstage,wecanidentifytwowaysinwhichtheknowledge producedthroughthepilotwasbeingstructured.First,weseea strictselectionofsevenparticipantswho,asaconsequenceofthe selectioncriteria,havehadlimitedpersonalexperiencesasclients -alreadylimitingtheroleofclient’sexperientialknowledgeinan earlyphase.Second,weobservehowthetrainingfocusedon par-ticipants’abilitiestoprovideunbiased,objective,observationsof clients’everydaylivesinthecarehomes.

3.2. Site-visits

Thepilotfocusedontwentyvisitstoaselectionoflong-term elderlycarehomesthroughouttheNetherlands.Thesevisitswere standard planned institutional reviews.Each visit wasdoneby two inspectors and two experts-by-experience.For experts-by-experience,theaimwastointerviewatleasttwoclients,make observations,writeareportonthespotanddiscussﬁndingsduring lunchwiththeinspectors.

Theselectionofclientstobeinterviewedwasarecurringpoint ofdebate.Theexperts-by-experienceneededhelpfrom employ-eestoﬁndclientswhowerewilling(e.g.didnothavevisitors,were nottired)andable(clientsofsomaticwardscanalsohavecognitive problems)totalktothem.Thisraisedworriesaboutbias,andduring thepilotitwasdecidedthattheexperts-by-experiencewouldask forthosewhowereunabletotalktotheminordertogainmore con-trolovertheselectionprocessofthosewhowere.Anotherconcern wastheanonymityofclients,asemployeeswereobserved report-ingtothemanagementwhotheexperts-by-experiencetalkedto.

During thedevelopment of the pilot, theteam decided the experts-by-experiencehadtoperformsemi-structuredinterviews. Thetopicswereformulatedwithoutinputfromthe experts-by-experienceandwerebasedonthemainthemesoftheinstrument usedbytheinspectors(seeBox 1).Experts-by-experience were instructedtouseaprint-outonA3-sizepaperandwritetheir ﬁnd-ingsfromboththeinterviewsandobservationsdirectlyonthat paper.For each maintheme,a separatenotessection was

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pro-vided,andsomedescriptiveinformationabouttheclient(name, carehome,date,indicationoflevelofcare)wasrequired. Experts-by-experiencewereaskedtoprovidedirectquotesfromclients, andaspacewaslefttonoteobservations.Noneoftheinterviews wererecorded.

Weobservedexperts-by-experienceusingthepaperastopic list,whereasotherstoldustheyuseditasastartingpointfora con-versation.Theconversationsweobservedlastedbetween15and 30minandgenerallytookplaceintherooms(apartments)ofthe clients.Experts-by-experiencestressedthatclientstalkedopenly withthem abouttheirexperiences in the carehomes, and the clientswetalkedtoafterwardswere,exceptforonewhonoticed thatthiswasnottheexpert-by-experience’severydayprofession, positiveaboutthecourseandintentoftheinterviews.The experts-by-experiencethusappeared good atcreatingrapportwiththe clients.Oneproved,forinstance,abletoquicklycreatea comfort-ableatmosphereforaclienttotalkinbybuildingonherexisting experiencesinmakingspaceforawheelchairinanarrowroom.

Atthissecondstage,wecanidentifyseveraladditionalwaysin whichtheproducedknowledgewasbeingstructured.First,the vis-itsrevolvedaroundtheexperts-by-experienceconversationswith clientsmuchmorethantheirobservationsofthecarehomes,and mucheffortwasmadetoselectthe‘proper’clients.Second,the experts-by-experiencewerenot involvedin thecreation ofthe themesof theinterview,and thesethemes appeared tolargely structurehowtheinterviewswereconducted.The‘practical wis-dom’oftheexperts-by-experienceappearstomanifestprimarily intheirrelationship-buildingstrategieswiththeclients.

3.3. Reports

Theexperts-by-experiencewrote theirreports byhand, and theseweregenerallyshortandstaccato.Theexperts-by-experience mostlynotedinformationabouthowclientsexperiencedqualityof life.Theywroteaboutthepersonalsituationoftheclient,the aes-theticsandatmosphereofahomeandremarkedongeneralpolicies andorganizationofthehomeaswellasclientparticipatory pro-cesses.Thisinformationwasstructuredbythethreegiventhemes butwasnotdeterminedbythem.Theexperts-by-experience,for example,notedinformation aboutthefeelingsand emotionsof clientsorintroducedtheirowntopics.Processissues(e.g.about method)werewritteninthemarginsor mentionedafterwards. Theexperts-by-experienceattemptedtobeasfactualaspossible intheirreportsandexperiencedtheneedtobeobjective:

‘R:[...]. Ialsodonotexpect[theIGJ]toaskme[back]for a secondpilot,becausethenI’llbescrewed-up[verziekt]. I:...wasted,depleted...

R.Yes,youareprobablyalreadyabitscrewed-upbythen,eh. I:Iwouldnotsaythat,but...

R:No,but,thatyouwillalreadyhavegottencertainideas.Then you’rewrong,ofcourse.’

[Expert-by-experience2,Interview1]

Thisexpert-by-experience is serious in his assertion that it wouldbe‘wrong’whenhewouldacquire‘ideas’ofhisown.Inthis viewagoodexpert-by-experienceshouldnotworkwithhisown ‘subjective’ideasnorgetover-professionalized(‘screwed-up’),but theyshouldrathersticktothedirectlyobservablefactsathand. Wefoundasimilaremphasisonobjectivityinthetrainingofthe experts-by-experience.

Inspectorsandexperts-by-experienceoftenhadlunchbefore thereportswerefullywritten.Inspectorswouldaskdirect ques-tionstotheexperts-by-experience,takingcaretoalsoaddressthe

needsandconcernsof theexperts-by-experience.Thismoment workedasthewrap-upforthevisit.Fortheinspectors, informa-tionfrom theexperts-by-experienceserved aspartof thedata collectedduringthedaytojudgethequalityandsafetyofthecare inahome.Inspectorswrotetheirownformalandpublicaccounts, wheretheyincorporatedtheinformationgatheredbythe experts-by-experience.Most often,inspectors usedtheinformation the experts-by-experienceobtainedaboutclients’everydaylives:

Expert-by-experiencereport:

’Formealsoftenusesthelivingroomortherecreationroom (weekend).Itisallowedtousethemealintheroomifshewants to’[atlivingenvironments]

‘Ifyou’vebeenawayandyoucomebackafterdinner,theyhave evenkeptitforyou.Youcaneatitlater?’[quoteatdailylife] [Expert-by-experience2,Home14-2]

Inspector’saccount:

"Aclienttellstoanexpert-by-experiencethatsheeatsinher roomintheevening,shegetsherownfoodintherestaurant, andwhenshecomeshomelater,caregiversstoreherfoodand giveittoherlater."

[AccountHome14,p.11]

Inspectorsdrewmostonthedirectquotesofclientsprovided byexperts-by-experienceandusedthesetoillustrateotherissues theywere raising.It wasdifﬁcult for theinspectors toprocess theinformation of the experts-by-experience.Wheninspectors couldnotcomparetheinformationfromtheexperts-by-experience withotherdata,theywouldproclaimit‘N=1’data:anecdotal evi-dencethathaslittleplaceintheiraccounts.Inspectorsnotedhow theexperts-by-experiencemostlyfollowedthegiventhemesand state:‘nottohavewrittendifferentaccountsasaconsequenceof thepilot’([27],p2).Anotherinspector‘does notknowwhatthe addedvalueishere’[27].Tousetheinformationofthe experts-by-experiencefeltmorelikean‘obligation’[27],andnotasvaluablefor safeguardingthe‘bottom-lineofquality’[27],whichtheyarguedis thecoretaskoftheIGJ.

Inthisthirdandfinalstageofthepilot,wecanidentifyagain howtheknowledgeinthispilotwasproduced.First,weseehow the method used in the pilot structured both the information gainedbytheexperts-by-experiences(e.g.writtenreport)andthe accountwrittenbytheinspectors(formal,legallyvalid),whichwas structuredbytheinstrumenttheyused.The‘naturalexperiment’ thuslimitedtheinspectorstofreelyworkwithallofthe informa-tionavailable.Second,wefindhowinspectorsusedtheworkand inputoftheexperts-by-experienceintheiraccounts,generally,as illustrationsinsteadofrelevantinputuponwhichtheirformal judg-mentswerebased.Assuch,experts-by-experiencewereusedto transferinformationfromclients,buttheirownperspectiveson qualityofcarewerelesssignificant.

4. Discussion

Inthispilotwithexperts-by-experienceinthesupervisionof long-termelderlycarehomes,wemightrecognizewhatiscalled the‘emancipatoryparadox’[5].Whereastheenthusiasmforthe empoweringideaofclientparticipationisclear,lessattentionis paidtothe actualworkingsof themethodology used.Thiscan leadto therepetitionof pilotsand programswithout the inte-grativeeffortneeded tojudge theiraddedvalue (cf[14,28]). It appearstobeverylaborintensivefortheinspectoratetoworkwith theexperts-by-experienceinthispilot,whilsttheaddedvaluefor informationonindividualcarehomesseemslimitedinthis particu-lardesign.Ourresultsshowthatthroughoutthedifferentstagesof thepilotaprofessionalepistemologydominatesthewaysinwhich knowledgeaboutqualityofcareisproduced.Factualinformation

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isrepeatedlyestablishedasbeingmorelegitimate,ensuringthat theexperts-by-experienceareunable,orfeelcompelled,tobring theirownexperiencesin,exceptforwhenestablishingcontactand speakingwithclients.Wenoteaspeciﬁcselectionofactiveclients andinformalcaregiversandafocusonlanguage(interviews, writ-tenreports),whicharedistinctfrompreviousprojectsthatfocused onobservations[14].Moreover,thistimewealsonoteethicalissues (anonymity)andhowlegalandinstitutionalresponsibilitieslimit participantstoexplorepossibilities.Thedominanceofthe profes-sionalepistemologycan,therefore,largelybeunderstoodfromthe designofthepilot,asitstructureswhatisatstakeandwhocan par-ticipate[22].Forinstance,thelackofearlyinvolvementofclientsin thedevelopmentofthethemestouseintheirinterviewsappearsto havemadetheirinvolvementlessworthwhile.Whereasthispoints totheneedtoinvolveclientsearlyineffortstoworkwith experien-tialknowledge,thisalsounderscorestheneedfordifferentformats ofparticipationtoensurediversityandrepresentationofthemost vulnerableandhard-to-reachgroupsofclients[21].Suchefforts generallyseemtoaskforanintensiveandco-operativeformat, suchasactionresearchtoincludechildren’sperspective[29]. Fur-thermore,thepilotcastsdoubtontheneedforinspectoratesto organizeexperts-by-experiencetohelpsuperviseindividual orga-nizations, althougha sectoral orthematic approach couldhave beneﬁts.Infact,theexperts-by-experiencelearnedthemostabout theworkingsoftheinspectorateitself.Theyappearedtovaluethe inspectoratehighly,illustratedbytheirprideintakingpartinthe pilot.Workingwithexperts-by-experiencemightthereforeopen upnewavenuesforpublicaccountabilitybyinspectorates.

We find thetenaciousness of the professional epistemology remarkableinlightoftheenthusiasmespousedinstartingand exe-cutingthispilotwithexperts-by-experience.Animportantpartof itsexplanationliesinunderstandingthewidersocio-political con-textoftheinspectorateandtheparticipantsofthepilot.Forone, historically,anecdotalexperientialknowledgeisvaluedlessthan knowledgeclaimsforwhichvaliditycanbeascertainedthrough statisticalmeans.Thepilotitselfhasalwayshadapolitical compo-nentfortheinspectorateinresponsetoexplicitcallsfromDutch governmenttotaketheclient’sperspectiveseriously[13].More importantly,dominatingwaysofknowingareaculturaleffect,not fixedbutcontingent,althoughdominatingdefinitionsinhealthrisk policyappear toechostronglyinpeople’s concernsaboutthese risks[30,31].Indeed,professionals’technocraticwaysofknowing remainameasuringstick[5],andthismeasuringstickisupheld bywayoftheinteractionsbetweenallparticipantsinthispilot. Ourresults,therefore,underscorethestrengthoflegitimatedways ofknowing,astheypersistininteractionsaimedatchallenging theirdominion. ContrarytoRose’sidentificationofthegrowing strengthofauthoritarianpopulismanditsappreciationofthe peo-pleassourceofknowing,oradvancedliberalismwithanethicof autonomy[18],hereweidentifytheperhapslastingstrengthof arationality(orgovernmentality[32])thatmaintainsthehighest regardsfor‘thosewhoknowwhattheyaretalkingabout’([33],p. 195).Expertsare,here,maderesponsibletodefineandvalue qual-ityandsafetyofcareandthepracticesthroughwhichtheseare appraised.Whereasthisismightbevaluableinitsownright,when invitingclients,citizensorlay-peopletothetablewithout provid-ingsomeformofcontroloverwhatisatstakeseemsunlikelytobe effective.Inparticular,thisisbecauseby‘disavowingdivisionand foreclosingradicaldisagreement[suchsituations]willfinditself confrontedwith[...]thereemergenceofconflict’([34],p.1582). Itisthusimportanttobe‘boldandmodest’[35]inaddressingthe tensionbetweenanepistemologyofthe‘people’andofthe ‘profes-sional’;inparticular,innewexperimentswithclientparticipation itseemscriticaltoleaveroomforexpanding thenotionof ‘the people’tobeinvolvedsotheyarediverseintheirexperiences, his-tories,valuesandidentities.Onesucheffortmightbepatient-led

ethnographiesthatprovearichsourceofinformationfor improv-inghealthcare[36].Wethereforecallforfurtherresearchonways toengageclientsinhealthcareregulationthatleadtotrulyvaluing theirownexperientialknowledge.

5. Conclusion

In this paper, we have followed a natural experiment with theuseofexperts-by-experienceinthesupervisionoflong-term elderlycarehomesbytheDutchHealthandYouthCare Inspec-torate (IGJ).Thepilotinvolved theinstitutionalreview visitsof twentyhomesfortheelderly.Sevenexperts-by-experiencewere selectedandtrainedbytheIGJtoaccompanyinspectorsonthese visits.Theexperts-by-experienceinterviewedclients,madetheir ownobservationsandreportedtheirfindingsbacktotheinspectors whousedtheseaspartoftheirdatatocastajudgementonthe qual-ityofcareoftheindividualhomes.However,whilsttheexperiment intendedtoopenupvalidnewexperientialknowledgeofclients onthequalityandsafetyoflong-termcaredeliverytoimprovethe regulationoflong-termcare,themethodologyofthepilot struc-turedthepracticesofexperts-by-experienceinsuchawaythat thisknowledgeisunlikelytobeopenedup.Paradoxically,wefind howaprofessionalwayofknowingisrepeatedlyvaluedmorethan thepracticalwisdomofclientsintheseexperimentalpracticesthat areostensiblyaimedatvaluingsuchexperientialknowledge.We understandthis inlightofthebroadersocio-politicalcontextin whichallparticipantsofthepilotoperateandseethe tenacious-nessoftheprofessionalwayofknowingasaculturaleffect.Todeal withthisculturaleffect,werecommendthatinfutureexperiments clientsmightgainmorecontrolaboutwhatisatstake,thatwho istobeinvolved couldbeopened-uptoinclude amorediverse range of experiences, and that the timingin which clientsare involvedseemscrucialfortheircontributiontomatter.We there-forecallforfurtherpragmaticandreflexiveexperimentationwith, andresearchinto,experientialknowledgeinhealthcareregulation.

Funding

ThisworkwassupportedbytheDutchHealthandYouthCare Inspectorate’sevaluationbudgetandexecutedundertheumbrella oftheDutchAcademicWorkshoponSupervision.

Conﬂictofinterest

None.

Acknowledgements

We would like to thank the project-team, the experts-by-experienceandcarehomesfortheirparticipationinthisresearch, andaregratefulforthecommentsandadviceprovidedbyour advi-sorycommitteeandRolandBal.Thelanguageoftheﬁnalpaperwas editedbyGailZuckerwise.AllquotesaretranslatedfromDutchby theﬁrstauthor.

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