Using the evaluation process as a lever for improving health and healthcare accessibility: The case of HCV services organization in Quebec

Citation for this paper:

Brousselle, A., Petit, G., Firaud, M., Rietmann, M., Boisvert, K., & Foley, V. (2016). Using

the evaluation process as a lever for improving health and healtchcare accessibility: The

case of HCV services organization in Quebec. Evaluation and Program Planning, 55,

134-143. https://doi.org/10.1016/j.evalprogplan.2016.01.004.

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Using the evaluation process as a lever for improving health and healthcare

accessibility: The case of HCV services organization in Quebec

Astrid Brousselle, Geneviève Petit, Marie-Josée Giraud, Michèle Rietmann, Krystel

Boisvert, & Véronique Foley

April 2016

© 2016 Astrid Brousselle et al. This is an open access article distributed under the terms of the

Creative Commons Attribution License.

https://creativecommons.org/licenses/by-nc-nd/4.0/

This article was originally published at:

Using

the

evaluation

process

as

a

lever

for

improving

health

and

healthcare

accessibility:

The

case

of

HCV

services

organization

in

Quebec

Astrid

Brousselle

*

,

Geneviève

Petit

,

Marie-Josée

Giraud

,

Michèle

Rietmann

,

Krystel

Boisvert

,

Véronique

Foley

a

CanadaResearchChairinEvaluationandHealthSystemImprovement,DepartmentofCommunityHealthSciences,Charles-LeMoyneHospitalResearch Centre,UniversitédeSherbrooke,Sherbrooke,Quebec,Canada

b

EstrieRegionalPublicHealthDepartement,DepartmentofCommunityHealthSciences,UniversitédeSherbrooke,Sherbrooke,Quebec,Canada

c

Centreintégrédesantéetdeservicessociauxdel'Estrie-CentrehospitalieruniversitairedeSherbrooke-InstallationCentrederéadaptationenDépendance, Canada

d_{Charles-LeMoyneHospitalResearchCentre,UniversitédeSherbrooke,Sherbrooke,Quebec,Canada} e_{Psychoeducation,UniversitédeSherbrooke,Sherbrooke,Quebec,Canada}

f

ClinicalSciences,UniversitédeSherbrooke,Sherbrooke,Quebec,Canada

ARTICLE INFO Articlehistory: Received8May2015

Receivedinrevisedform7December2015 Accepted10January2016

Availableonline21January2016 Keywords: Evaluation Empowermentevaluation Use HepatitisC Accesstocare ABSTRACT

Background:Theevaluationprocesscanbealevertoimprovepathwaysofaccesstohealthcare.The objectiveof this articleis toshowhowanevaluation strategycan bothcontributeto knowledge developmentandhavedirectimpactsonhealthservicesprovision.WeusethecaseofhepatitisC(HCV) servicesorganizationtoillustratetheuseandthevalueofthisevaluativeapproach.

Method: Inspired by empowermentevaluation, thetransformative–participatoryapproach involved overlappingphasesofknowledgedevelopmentanddiscussionwithstakeholders.Weconductedseveral knowledgedevelopmentactivitiestodiscerntheneedsofpeoplewithHCV,theresourcesavailable,and thefacilitatorsandimpedimentsalongthecarepathway,startingfrompreventionandscreening,allthe waythroughtotreatment.Usinganoverlappingapproachallowedustoregularlytransferacquired knowledge back to the participants in the study settings and also to gather their impressions, interpretations,andsuggestionsduringperiodsofdeliberation.

Results:Theknowledgedevelopmentactivitiesmadeitpossibletodocumenttheneeds,resources,and experiencesofpeopleaffectedbyHCV.Inthediscussionsessions,viablesolutionswereidentifiedto improvehealthandhealthcareaccessforpeoplewithHCVandtoprioritizecertainactions.Thisproject demonstratedthatusingtheevaluationprocesscanenableaninstrumental,conceptualuseofresults and,infact,canhaveatransformativeimpactonservicesorganization.

ã2016TheAuthors.PublishedbyElsevierLtd.ThisisanopenaccessarticleundertheCCBY-NC-ND license(http://creativecommons.org/licenses/by-nc-nd/4.0/).

1.Introduction

Thefieldofevaluativeresearchinhealthiswhereseveraltrends intersect.Thefirstoftheseisfundingagencies’intentiontoensure researchisusefulandtopromoteitsusebythevarioussettings involved.This intention_finds expressionin therequirement to transferresearch-basedknowledgeintopracticesettings,withkey actors’participationbeingtargetedasaprerequisiteforachieving thisobjective (CHSRF,2003,2005;Denis &Lomas,2003; Lavis,

Roberston,Woodside,McLeod,&Abelson,2003;Lomas,2005).The second isthe recenttrend of interventionalresearch inhealth, which aims to increase the impact of research results on population health by no longer focusing on the analysis of determinantsofhealth,butratheronpublichealthinterventions (Hawe&Potvin,2009;Morabia&Costanza,2012).Thethirdisthe demonstratedsynergybetweenthecontextualcharacteristicsof the evaluation environment and the participatory approaches adopted,which explains theuseof evaluation results ( Contan-driopoulos&Brousselle,2012).

Thesethree trends, incomplementarybut differentsettings, have led us to rethink the evaluative process, not—as has traditionallybeen the case—to reacha judgmentonthe worth andvalueofanintervention(Scriven,1991),butrathertousethe

*Corresponding authorat: CRHCLM, Universitéde Sherbrooke,Campus de Longueuil,Bureau200,C.P.11,Longueuil,QuébecJ4K-0A8,Canada.

E-mailaddress:astrid.brousselle@usherbrooke.ca(A.Brousselle).

http://dx.doi.org/10.1016/j.evalprogplan.2016.01.004

0149-7189/ã2016TheAuthors.PublishedbyElsevierLtd.ThisisanopenaccessarticleundertheCCBY-NC-NDlicense(http://creativecommons.org/licenses/by-nc-nd/4.0/).

ContentslistsavailableatScienceDirect

Evaluation

and

Program

Planning

evaluativeprocessasalevertoimproveaproblematicsituation. Theobjectiveofthisarticleistoillustratehowatransformative– participatory evaluation based on an empowermentevaluation approach(Fetterman&Wandersman,2005,2007;Mertens,2009; Weaver&Cousins,2004)cancontributetoknowledge develop-mentwhile,atthesametime, havingdirectimpacts onservice provision.HerewepresentthecaseofhepatitisC(HCV)services organizationtoillustratetheuseandthevalueofthisevaluative approach.

HepatitisC,alsoknownasthesilentepidemic,isaninfection transmitted through blood-to-blood contact. Physicians have access to treatments that can cure 50_–80% of cases (MSSS, 2009), including recently introduced treatments that are even moreeffectivewithfewerundesirableeffects(Leclerc,Morissette, Alary,Parent,&Blouin,2014).However,eventhoughQuebechasa universalhealthinsurancesystem,only10%ofpersonsdiagnosed withHCVreceivedtreatmentintheperiod1990–2004(Allard& Noël,2006).ThosemostatriskofcontractingHCVareintravenous drugusers(IDU).Eventhoughtheprevalenceofinfectionislowin thegeneralpopulation(1%inQuebec)(MSSS,2009),63%ofIDUs areinfected(Leclercetal.,2014;Noëletal.,2006),andmorethan 25%ofIDUscontractHCVeveryyear(MSSS,2009).Thesepersons oftenpresentmultipleissuesrelatedtomentalhealth,thecriminal justicesystem,andco-occurringinfectionssuchasHIV,leadingto even greater social stigmatization (Chayer, Vieux, Bruneau, & Jutras-Aswad, 2011; McCoy, Metsch, Chitwood, & Miles, 2001; MSSS, 2009; Noel, Gagnon, & Cloutier, 2012; Popova, Rehm, & Fisher,2006).Assuch,theyencountersignificantbarrierstoaccess tohealthcare(Butt,McGuinness,Buller-Taylor,&Mitchell,2013; Patten,2006)andtoHCVtreatmentinparticular(Leclercetal., 2014).Thosebarrierstoaccesstotreatmentforpersonsdiagnosed with HCV provided the impetus for this evaluative research project.

Firstwedescribetheevaluativeresearchapproachweused.We then present our findings and their impacts on knowledge development,theresultsfromstakeholderdiscussions, and the

evaluation’s impacts on conceptual and instrumental use of results.

2.Evaluationstrategyandmethodology

Inthis studywe hadtwoobjectives:(1)tocontributetothe development of knowledge, and (2) to have an impacton the organizationofhealthcareservicesforpersonswithHCV.Ouraim was to cover thecomplete care pathway, fromprevention and screeningthroughtotreatment.Wedesigneda transformative– participatory evaluation strategy (Weaver & Cousins, 2004) inspiredbyempowermentevaluation(Fetterman&Wandersman, 2005),insuchawaythattheevaluationprocessitself couldbe used asa levertoimprovethe situationbeingstudied(Patton, 2012). The principle was to bring together stakeholders from differentsettings,allofwhomwereinvolvedintheissue,inorder toprovidethemwithobjectiveandcredibleinformation sothat theymightcometoasharedunderstandingoftheproblemand develop solutions withas much consensus as possible.In that sense,we putintopracticetwoprimary usesof theevaluation process,asidentifiedbyPatton(2012,p.144):enhancingshared understandingandincreasingparticipants’engagement,senseof ownership,andself-determination.Inthisprocess,theevaluators’ roleinvolvesnotonlydevelopingknowledge,butalsofacilitating andorganizingdiscussionsanddeliberations.

Thestudywasconductedoveratwo-yearperiod(May2011– June2013)intheEstrieregionofQuebec,whereaccesstohepatitis C treatment for IDUs had been identified as problematic. We formedaroundTableofstakeholdersselectedbasedontheirroles in thecarepathwayofpersonswithHCV,alongthecontinuum ranging from HCV vulnerability all the way to treatment. Our participantsincludedstreetoutreachworkers,aperson represent-ing IDUs, community workers and professionals involved in preventionand supportfor personswith HIV and STIs, profes-sionalsfromtheaddiction rehabilitationcenter, representatives fromthesoupkitchen,membersofthelocalprimarycarecenter

team, and hospital physicians specialized in gastroenterology, infectious diseases, and psychiatry. Average attendance at the meetingswasabout 10people,mostof whomattendedallthe meetings,withothersjoininginonlyonceortwice.Thisproject receivedethicalapprovalfromthevariousresearchcommittees involved.

Our process involved overlapping phases of knowledge construction and discussion with participants. Using an over-lapping approach allowed us to regularly transfer acquired knowledgebacktotheparticipantsinthestudysettingsand to gathertheirimpressions,interpretations,andsuggestionsduring periods of deliberation. As such, this was a participatory and deliberativeprocess in which objective and credible data were usedasakeymeansofstructuringthediscussions.Fig.1illustrates thechronologyandoverlappingofthestudyphases.

Weheldfivestakeholdermeetings,eachlastingtwotothree hours.Thesemeetingswererecordedandtranscribedverbatimso thatwecouldworkfromthetranscripts.Atthefinalmeeting,the groupdeveloped aconsensusonthemostrelevantand highest prioritysolutionstoimprovetheprevention–screening–treatment pathwayforpeoplewithHCV.First,goingaroundthetable,the participants each put forward one or two problems they consideredhighpriority.Consideringalltheproblemsidentified, theparticipantseachvotedforthreetheysawashighestpriority. Then,forthetwohighestpriorityproblemsemergingfromthat process,thegroupidentifiedactionablesolutions.

We conducted several knowledge development activities to identifytheneedsofpersonswithHCV,theresourcesavailable, and the facilitators and impediments along the care pathway extending from prevention, through screening, all the way to treatment.To discern the needs, we used two sources: (1) an ongoing longitudinal survey of IDUs (SurvUDI) conducted by

Quebec’s public health institute, which provides sociodemo-graphic and epidemiological data, as wellas data on injection andconsumptionpractices,and(2)datafromQuebec’snotifiable diseasesdatabase(MADO)todevelopaprofileofIDUsandpersons diagnosed as hepatitis C carriers in Estrie. To inventory the availableresources,wedevelopedmapsoftheregion’sresources. WeproducedfourmapseachfortheEstrieregionandthecityof Sherbrooke,thatregion’slargesturbancenter,foratotalofeight maps,indicating:(1)locationswheresterileinjectionsuppliesare distributed for free(prevention)and thevolume oforders(see Figs.2and3)(notethatthemapsdonotshowpointsofsale,such asprivatepharmacies,whichareimportantdistributionpointsand haveextendedopeninghours);(2)hepatitisscreeninglocations; (3) locations providing treatment; and (4) resourcesproviding support services for IDUs and persons with HCV (lodging, psychosocial support,etc.). We used a varietyof data sources. For syringedistribution locations,establishmentsdesignatedas centersforaccesstosterileinjectionsuppliesfortheperiodApril 2008–March2011wereclassifiedbylevelofactivityintermsof syringesdistributed (low=1–499 syringes, moderate=500–999, high=1000and over). To develop a profileof thepsychosocial resourcesavailable,weconsultedthewebsitesofpublic establish-mentsandthedirectoryofcommunityorganizationsforthearea. We identified HCV screening sites in collaboration with the regionalHealthandSocialServicesAgency,bymeansoftheMADO registry. Lastly, we identified the resources providing medical treatment for HCV by looking at the missions of the region’s varioushealthcareestablishmentsandtheiradmissioncriteriafor this clientele. The resulting maps were presented to our participants,aswellastofourfocusgroupsofpersonsatdifferent pointsalongtheHCVpathway;theywerethenrefinedbasedon thatfeedback.

Todocumentthefactorsexplainingthehealthandhealthcare pathways,weconductedfocusgroups.Theseweremadeupof:(1) IDUs,todocumenttheirinjectionandsyringeexchangepractices andtheirperceptionsanduseofresourcesintheregion(twofocus groups); (2) persons diagnosed as HCV carriers but not in treatment, to learn about their history with this disease, their accesstocareandservices,andbarrierstheyencountered (one focusgroup);and(3)personsdiagnosedandtreatedforHCV,to find out about the conditions surrounding their access to treatmentandtodocumenttheircarepathways(onefocusgroup). These focus group sessions were recorded and transcribed. To determinewhetherwe had reachedsaturation, wewouldhave neededtoorganizeatleastonemoreseriesoffocusgroups,butit wasnotfeasibletorecruitparticipantsforasecondround(Krueger &Casey,2014).ItwasdifficulttorecruitIDUsinthefirstplace,as theywerewaryofexposureandmistrustedauthorityfigures.In theend,thoseweinterviewedwerenotyoungpeople,butrather peoplewhohadlongexperiencewithinjection.

Theproject’simpactwas documentedthroughcareful moni-toringofchangesattributabletotheevaluationproject,whichwas accomplishedbymeansofparticipantobservations,byhavinga keyactor/partnerintheteamofco-investigators,andbysurveying theparticipantsattheendoftheprojectabouttheirconceptual andinstrumentaluseofthestudy’soutputs.

3.Results

Theresultsarepresentedinthreesections.Webeginwiththe empiricalresultsoftheproject,afterwhichwepresenttheresults fromdiscussionswithpartners.Lastly,wediscussconceptualand instrumentalusesofthefindingsofthisevaluationproject. 3.1.Developmentofknowledge

3.1.1.Needs

Accordingtoourdatasources(SurvUDIandMADO),nearly55% ofIDUsintheregionstudiedwereinfectedwithHCV;10.5%were infectedwithbothHCVandHIV.Menmadeup83%ofIDUs,yetthe womenwereproportionallymoreinfectedthanthemen(73%vs. 52%).Thedatarevealedthat39%ofIDUsbetweentheagesof25 and39yearsand60%ofIDUsaged40andoverwereinfectedwith HCV. Most lived in Sherbrooke, the regional capital, but the numbers suggested considerable mobility, as 52% of IDUs had movedwithintheprevioussixmonths.Also,37%ofthosesurveyed wereinprison.Thispercentagealmostcertainlyoverestimatesthe realratioof incarceratedtonon-incarceratedIDUs, however,as identifying and surveying IDUs in the community presents a challengefortheSurvUDIsurveyrecruitmentprocess.Ofallthe drugsconsumedbyinjection,cocainewasthemostfrequent.For 35%oftheIDUs,theirfirstinjectionoccurredbeforetheageof20 years;75%ofIDUsinjectedinthepresenceofanotherperson,69% withsomeonethey knew,and mostoftentheyinjectedintheir

ownapartmentorafriend’shome.Lastly,80%reportedthatthey neverexchangedneedleswithanotherIDU,but61%reportedthat theyhadoccasionallyusedpreviously-usedsyringes.

WithregardtoIDUs’useofservicesrelatedtoHCV,thedata showedthat97%hadundergoneatleastonescreeningtestintheir lifetime.One-quarterofthemhadbeenscreenedinahospital,and anotherquarter,inprison;10%werescreenedbytheclinicalteam following the homeless, and 6% were screened at the local communityhealthcenter.OftheinfectedIDUs,59.5%saidtheyhad notconsultedaphysicianaboutHCVintheprevioussixmonths, and 82% said they had never taken any medication for this infection.

ThesedatarevealthemagnitudeofHCVinfectionamongIDUs, their great mobility, and the frequency of injection related to cocaineuse.Theseresultsraisequestionsregardingtheavailability andaccessibilityofsufficientlylargequantitiesofsterileinjection suppliesandtheiravailabilityindetentioncentersandnearthe areaswhereIDUsreside.Thesedataindicategoodaccessibilityof HCVscreeningservices,butinfrequentmedicalcareandtreatment followingdiagnosis.

3.1.2.Resources

All the regionalmaps are presented in additional files(city maps not included) (online Supplemental material). Here we presentonlytwoofthem,toillustratethemethodologyused.

In Estrie,150,000 freesyringesaredistributed annually.The mainlocationswheresterileinjectionsuppliesareavailableare pharmaciesandlocalcommunityhealthcenters(CLSCs).Ofthe30 establishmentslisted,sevenhadahighdistributionvolume;these weremostly located in Sherbrooke. Differences in distribution

volumewereduenotonlytoprevalenceofinjection,butalsoto differencesinaccessibility.Infact,certainhigh-volume distribu-tioncenterswerelocatednearothercenterswithlowdistribution volumes, whichunderscorestheimportanceofdeterminantsof accessibility.Onlyfiveofthe30centerswereactivelyengagedin educatingIDUs.Onlytwodistributionpointswereopen24haday, sevendaysaweek,oneofwhichwasthehospitalemergencyroom (ER).

Therewas good geographic coverageof screening sites. The urbancenterscarriedouthighervolumesofscreeningtests.HCV screeningwasoftendoneconcurrentlywithHIVscreening.When the project started, HCV treatment was only available in the region’s main urban center, at the hospital and the infectious diseasesoutpatientclinic.Asforpsychosocialsupport,themaps showgoodcoverageregionallyandconsiderableheterogeneityin thetypesofservicesoffered.

3.1.3.Facilitatorsandimpedimentsinthecarepathway

Thein-depthanalysisoftheinterviewsispresentedinanother article(Foleyetal.,submittedforpublication).However,herewe present,inatable(Table1),thedeterminantsinthecarepathway of personswithHCVwithregard toprevention,screening,and accesstotreatment. Wedidnot assumean HCVdiagnosiswas routinelyfollowedbytreatment.

3.1.4.Cross-sectionalanalysis

Intermsofprevention,cross-sectionalanalysisofthesethree typesofdataconfirmtheexistenceofaproblemwithregardtothe availabilityofsyringesasa meansofpreventing HCVinfection. MostIDUsinjectcocaine.Duringtheperiodwhentheyareusing

Table1

DeterminantsofthehealthpathwayofpersonswithhepatitisC.

Determinants Quotes

Prevention Availabilityofsyringes “100syringes... That’snotmuch,100syringes,becauseyouhavetochangesyringeseachtime.” Receptionatthedistributionlocations “You’reneverwelcomewhenyougototheERtogetsyringes!Eventhenurseslookatyousideways,so,you

know....” Poorknowledgeabout,orlackofinterestin,

hepatitisC

“Iknowitbecause... forme,inEstrie,hepatitisC,itwasunknowntome.Itookitlightly.”

“Iknewenoughaboutit[hepatitisC].Iknewalittleaboutwhatitwaslikeasanillness.Inewthattheperson hadit:‘It’snobigdeal!’Iwasstoned,soIdidn’tcare.”

Indifferencetowardtherisk “AndifItalkintermsof‘me’,whenIinjectedmyself,Ididn’tgiveadamn.Iwasin10feetovermyhead.Itwas like... Toacertainpoint,we’rechasingafterourowndeath,bitbybit,youknow?Youknowit,and ... pfft,youdon’tcare.”

Injectionpractices “Like... Iwasstoned,Iwasinastateof... astateofeuphoria,inotherwords,ofusingcocaine.Therewas onethatwascontaminatedwithHIV,andsometimesyoumanagetoinjectandsometimesyouhavetrouble withit,youbecomeblind.Youhavetroublefindingyourveins... Sohesaidtome,‘Doyouwantto... shootup?’SoIputoutmyarm.”

Prisonenvironment “Wewere700prisoners,andoutofthosetherewere,Idon’tknow,300–400whowereheroinaddicts.Sowe probablyusedthesamesyringetoinject,Idon’tknow,100ofus!”

Screening Wantingacompletephysicalexam “Andsoaround20yearsago,because,afterall,Iwasusingdrugs,Isaid,justtohaveanidea,tobesure, becauseI’maveryinsecureperson,Isaid,I’mgoingtobetested... I’dliketobetestedforeverydisease.” GettingtestedforHIV “Whatworriedmethemost,becauseI’mgay,wasmoreHIV,whichIwantedtocheckonbecauseI’dhadsex

withalotofpartners,andthat’swhenIfoundoutthatwhatIhadwashepatitisC,andnotHIV.” Partner’sinsistence “At45years,mygirlfriendsaid:‘Okay,nowit’sthefingerintheass,thebigtest,goforthewholething!”’ Worrisometestresults “Thenurse,whenshegavemetheresultsofmybloodtests,shesaidmyATLenzymeswereveryhigh,and shedidn’tactuallysayitwashepatitis,butIcouldseetherewassomething.Sothen,Iwentintotreatment, andIwaslucky,Iactuallyhadthetest,andIfoundoutrightawaythatIwasinfected.”

InformationdistributedonSTIsandHIV “TherewereCLSCnurseswhocameanddidascreening,talkedwithusaboutSTIsandallthat.SoItookthe initiativetohavethebloodtests.”

Accompaniment “BecauseIwashomeless,Iwasreallylikeahomelessperson,withnoconnections,nohealthservices,social services,whatever.Theyjustbroughtmethereto ...”

Accessto treatment

Poorknowledgeoftheillness,feeling healthybecausesymptom-free

“Nosymptoms,Ididn’tfeelsick,youknow...Ididn’tknowwhatIshoulddo,andIwasn’tplanningonliving tobe90,either,youknow... Ididn’thavethebestlifeintheworld,intravenousdruginjection,that’snot verymuchfun.”

Physicianattitudeatdiagnosis “Andthatverysamedoctoreventoldmesomethingonce,hesaid:‘You’lldiesoonerfromdrinkingthanfrom hepatitis.”’

Fearoftreatment “Weusedtohearpeoplesayingthatitwaslikechemotherapy.Andwhatweheardaboutchemowasthat, well,youwereflatonyourback,yourhairfellout,yourteeth,yourballs,theworks,so!Itwasahugebattle.”

cocaine, they inject many times and need a large number ofsyringes(sometimesseveralhundredinaweek),whereasour datashowamuchmoreparsimoniousdistribution.Eventhough thereweretwodistributionpointsopenatnight,theIDUsseemed tobeawareonlyofone,theER.Furthermore,theprisonappeared, inourfocusgroups,tobeasettingthatplacedIDUsatparticularly highriskofreusinginjectionsupplies.Nevertheless,thesituation reportedby ourrespondents maynot be the samein regional prisons;thisquestionneedsfurtherinvestigation.

Thesurveydata,maps,andfocusgroupresultsallconfirmed goodcoverageintermsofhepatitisCscreening.

Our empirical results con_firmed the problem of access to treatment,which,fromourdata,appearedtobedueto:(1)thefact that there was only one treatment center, (2) professionals’ attitudeswhenannouncingthediagnosis,and (3)thebeliefsof thosediagnosedregardingthetreatment’ssideeffects.

3.2.Resultsfromstakeholderdiscussions

Asourprojectadvanced,weorganizedstructuredencounters withstakeholderstodiscusstheresultsandenrichouranalyses,as wellastoidentifysolutions for a more effectivestructuringof serviceprovision.Theresultsofthesediscussionsarepresented here,notmeetingbymeeting,butratherinthematicsummariesof theobservations,frompreventiontotreatment.Wealsopresent theresultsofthepriority-settingexercisesappliedtotheproposed solutions for improving the prevention–screening–treatment pathwayforpersonswithHCV.

3.2.1.Prevention

Theparticipantsweresurprisedonseveralcounts:thesmall numberoflocationsdistributingfreesterileinjectionsupplies;the numberofsyringesneededbytheIDUsiftheyweretousenew supplies for each injection; and, as such, the considerable gap betweenthenumberofsyringesdistributedandtheactualneeds ofIDUs,whichwasnotapparenttothembeforeourdiscussions. Theyputforward several structural suggestionsto optimize preventive services, centered especially around the two key concernsofaccessibilityandeducation.

1)The importance of making sterile injection supplies more accessible, especially at night. Currently there are only two distributionpointsopenatnight,and onlyoneofthem—the ER—iswidelyknowntoIDUs.Participantssaidmany distribu-tion locations do not provide information on preventive injectionpractices,areclose-fistedintermsofthenumberof syringestheywillgiveout,andinsistonsyringeexchange,as opposedtosimple distribution.However,since requiringthe return of used syringes is perceived as an obstacle to accessibility,participantssuggestedthatsyringesbe recuper-ated without making this a condition for access to sterile supplies.Theystressedtheimportanceofhavingastorefront distributionsiteopen24heveryday.Oneparticipant,astreet worker, spokeabout theeffectivenessofmultiplying agents: actorsinthecommunitydistributeinjectionsuppliesthatare then disseminatedinlargequantities by multiplyingagents, suchasdealersorotherswhoareinrelativelyclosecontactwith IDUs.However,suchasystemcanonlybesetupiftheworkeris abletoestablisharelationshipoftrustwiththosemultiplying agents,whichisbuiltupovertime.Suchasystemalsomakesit possible to recover used syringes. Police dismantling of ‘shootinggalleries_’isanimpedimenttothistypeofdistribution strategy,however,as thesiteswhere IDUshad been ableto congregateareclosed,generatingmore mistrustofauthority andfearsofgettingcaught.

2)Theimportanceofprovidingeducationandnotjustdistributing supplies. Thereappearedtobea consensusthatdistributing sterileinjectionsupplieswillnothavemuchofanimpactifIDUs arenotalsotaughtaboutsafeinjectionpractices.Yetmanyof the current distribution sites did not devote any time to education. The participants also insisted that, to be able to conveycertaineducationalmessages,itisnecessarytoestablish human contact and a relationship of trust, and that this is unlikely to occur in impersonal distribution sites such as pharmaciesandtheER,oriftheIDUisinastateofwithdrawal.

3.2.2.Screening

All the participants agreed it is not appropriate to suggest screening to IDUs when theycome to obtain syringes. Before suggestingscreening,workersneedtoestablisharelationshipof trustandfindoutabouttheperson’sinjectionpractices,whichis not easy to do while respecting the person’s privacy. The participantsalsoinsistedontheneedforpost-screening interven-tion,stressingtheimportance,whencommunicatingtheresults,of providingrelevantinformationontheillness,meansofprevention, andexistingtreatments.

3.2.3.Treatment

Whentheprojectbegan,therewasonlyonecenterthatoffered treatmentforHCV—theregionalhospital.Ourprojectcontributed, as a catalyst,tothecreation ofa second treatmentsite, atthe addictionrehabilitationcenter.Thisisadaycenterwhoseclinical teamconsistsofprofessionalstrainedingastroenterology,nursing, andpsychoeducation.Withinitsfirstyearofoperation,25persons wereseeninconsultationandninewentintotreatment.According to the gastroenterologist, who also provides treatment at the hospital, the rehabilitation center’s organization is ideal for patients. The psychosocial support they receive is clearly advantageousfortreatmentcontinuity.Thankstothis organiza-tionalmodel,thephysicianwasabletoacceptintreatmentsome lessstablepersonswhomhewouldhavehesitatedtofollowatthe hospital.

Theeligibilitycriteriafortreatmentarequiterestrictive.The personmustnolongerbearegularuser,andmustbemotivated and sufficiently stable. For the time being, persons with co-occurring HIV infection are not eligible, even though the gastroenterologist stressed the importance of treating them; otherwisethesepersonsareatriskofdyingofuntreatedhepatitis. Organizingamultidisciplinaryteamappearstobeonewayof reducing certainproblemsof accesstotreatment.Sucha team, made up of professionals in different organizations, could be helpfulin maintainingcontact withthemore unstablepersons whoarenoteligiblefortreatment,andmightfacilitatetheiraccess to treatment when their living conditions become stabilized. Duringtreatment,amultidisciplinaryteamapproachwouldlead to better supervision and follow-up and increased patient retention. The participants spoke about the need to establish linkswithvariousresourcesand todevelop clearpathways for managing this clientele. Theynoted that the map of resources showedtherewasalreadyagreatvarietyofpsychosocialresources intheregion,andinlargenumbers,althoughsomeinvestigation would be needed to find out whether these resources were preparedtogetinvolvedinfollowingthisclientele,andifso,under whatconditions.Assuch,thereappearstobeaneedtoidentifyand providetrainingtoorganizationsthatwouldbewillingtoinvestin acontinuumofservicesforpersonswithHVC.

3.2.4.Prioritizingsolutionsforimprovingtheprevention–screening– treatmentpathway

3.2.4.1. High-priority problems. The problems identified by the groupareasfollows,inorderofprioritybasedonvoting:(1)no identificationofavailableresourcesandlackofclarityaboutthe care pathway (need for formalized links, multidisciplinary collaboration, support for persons affected, preparation for treatment);(2)lackofavailabilityintermsofthedistributionof sterileinjectionsupplies(needformultiplyingagents,distribution resources,24/7coverage, supervisedinjectionsites);(3) lackof knowledge about HCV among IDUs and professionals; (4) difficultiesinaccessingmedicaltreatmentforHCV(retentionin treatment, services performance, services organization, geographiccoverage);(5) non-existence ofany sterile injection supplies distribution program in the prison system (need for creationofatreatmentsite);(6)lackofawarenessamongyouth (inadequate information on prevention, vulnerability of young persons);(7) no identification of measures to provide support before,during,andaftertreatment;and8)lackofpre-and post-treatment counseling. The group identified actions to be implementedforthetwoproblemsconsideredmostimportant.

3.2.4.2.Priorityactionstoidentifyavailableresourcesandclarifythe patient pathway. Participants identified the need to build on healthcareestablishments’andcommunityresources’willingness toworktogether,inacomplementarymanner,to:(1)consolidate the services network and the prevention–screening–treatment pathwayfor HCV infection; (2) clarify the variousparticipants’ respective roles and responsibilities; (3) make this pathway known;and (4)obtainthesupport,includingfinancialsupport, of the decision-making authorities to create and sustain the relevantpartnerships.

3.2.4.3. Priority actions to make sterile injection equipment more available. Participantsappraisedthemeritsofsettingupashared sitewhere differentservicepartners couldtaketurnsproviding coverage, notonlytodistributesterileinjectionequipment,but alsotoofferhealthcareservices,counseling,healtheducation,and psychosocialsupport,andtobuildonopportunitiestoestablish relationshipswiththeIDUs.

Participantsalsorecommendeddistributingsyringesbythebox ratherthansinglyandsuggestingtoIDUsthattheypassthemalong to their friendsand acquaintances. This would bean easy and inexpensive wayto distribute a largervolume of syringesusing multiplyingagentswhoalreadyhavesignificantconnectionswith otherIDUs.

3.3.Conceptualandinstrumentaluses

Theaimofthisprojectwastoproviderelevantandobjective informationregardingthephenomenonofHCVintheEstrieregion of Quebec, so that the participants could develop a shared understandingofthesituationandmighttogetheridentifysome avenuesforsolutionstoimproveservicesforpersonswithHCV. Thisinvolvedseveral typesof researchuse:instrumental,when researchresultshaveatangibleandprogrammaticinfluenceonthe issue or program being studied; conceptual, when the study influencestheactors’understandingofaphenomenonandtheir conceptualizationof it(Contandriopoulos, Brousselle,&Kêdoté, 2008;Greene,1988;Weiss,1977);andsymbolic,whentheresults servetolegitimizethepre-determinedpositionsofcertaingroups of actors(Beyer &Trice,1982; Champagne,Lemieux-Charles, & McGuire,2004;Cousins&Whitmore,1998;Greene,1988;Preskill, Zuckerman,&Matthews, 2003;Shadish,Cook,&Leviton,1991). Participatoryevaluationhasgenerally beenseenas a meansto increasethesethreetypesofevaluationuse(Turnbull,1999).

In the context of this project, we are unable to assess the symbolicuseoftheresults.However,basedonourobservations andontheparticipants’perceptionsof changes,weare ableto assess,toacertainextent,theconceptualandinstrumentalusesof thisproject’sresults.InFig.4,wesummarizethemainempirical findingsandlinkthemwithconceptualandinstrumentaluses. 3.3.1.Conceptualuse

Conceptual use is a prerequisite to instrumental use. In a situation where change is needed, it will not occur until participants agree on the need for action, the solution to be implemented,andthemeanstobemobilized.Contraryto non-participative evaluation,in which findings are transmittedat a givenmomentintime,inthisprojectwededicatedspecifictimes todeliberationandexchange.Theabsenceofdisagreement,with, attheendoftheproject,theidentificationofprioritiesforaction arethemselvesrecordsofconceptualuse.Weconducted partici-pantobservationactivitiesduringwhichwekepttrackofchanges inthevariousactors’representations,undertakings,and commit-ments.Tosupplementourobservations,wedevelopeda question-nairethatparticipantscompletedattheirfinalmeeting.According tothequestionnaire,ofthe10attendeesatthatmeeting,between 8and10reportedthat,attheendoftheproject,theyhadmore knowledgeabout:thephenomenonofHCVin Estrie;theuseof injectable drugs;the realities for IDUs and personswith HCV; unmet needs; difficulties related to prevention, screening, and treatment;therolesofthedifferentpartners;andthesolutionsto beimplementedtoimprovethecarepathwaysforpersonswith HCV.Eventhoughtheseresultsareself-reported,thereappearsto havebeenastrongconsensusthattheprojecthadanimpactonthe participants’ knowledge and representations. The fact that the discussions about solutions were not polarized is another indicationthattheparticipantssharedacommonunderstanding oftheproblems.

3.3.2.Instrumentaluse

In the field of evaluation, instrumental use appears to be relativelyinfrequentandmostoftenoccursgraduallyanddiffusely (Contandriopoulosetal.,2008;Patton,1988).Yetwewereableto observe modifications to the service offer that were directly attributabletotheevaluationproject—inparticular,thecreationof adaycenterforHCVtreatmentattherehabilitationcenter.This was a key spin-off of this project on healthcare services accessibility.Otherprogrammaticspin-offsmightalsobepossible ifeffortscouldbeinvestedinraisingawarenessamongkeyactors in the regional network. This latter dimension brings us to considerationofthelimitationsofourapproach.

3.3.3.Limitations

The time frameof theevaluationprojectclearlylimited the implementation of real changes that could improve access to health and healthcare for persons with HCV. The time frame createdabreakintheconceptual-to-instrumentalusescontinuum. Thefactthatthis exercisewasundertakenaspartofaresearch projectgavethisprocessatemporalframethatbothmobilizedthe actorsand,atthesametime,limitedthetimewithinwhichthey wereabletopursuetheobjectivesidentifiedduringtheproject.In thisrespect,themainlimitationofthisproject,thetemporallimit, wasalsoitsstrength.

4.Discussion

RecentlyContandriopoulosand Brousselle(2012)proposeda newinterpretation of thedeterminantsof evaluationuse. They showed that the primary determinant is the fit between the premises of the evaluative theories/approaches used and the study’s implementation context. In contexts where actors are ready toinvestresources,participative approachesare likelyto lead to an appropriation of results. Here we designed a transformative–participatoryapproachinspiredbyempowerment evaluation principles and methods. Research onempowerment evaluationhasshownthattheempowermentevaluationapproach isregularlyadaptedtotheevaluationcontext(Miller&Campbell, 2006),whichisconsiderednormalanddesirableaccordingtothe conceptorsofthisapproach(Fetterman&Wandersman,2007).The evaluationprocess,inthiscase,wasorganizedtoallowperiodsof discussionbasedonobjectiveempiricaldataandtoencouragethe various actors to take action. The fact that this study was undertakeninacontextthathadbeenpreparedandwasreceptive tocarryingoutthisevaluationproject,thattheactorswerereadyto investtime andparticipateactivelyinthestakeholdermeetings (cost-sharing),andthattheysharedtheperceptionthatthecurrent situationofservicesforpersonswithHCVwasinadequate(low issuepolarization)—allcombinedtopositionthisstudy inwhat Contandriopoulos and Brousselle have called “utilization para-dise”.Thegoodfitbetweentheevaluativeapproachadoptedand theevaluationcontextmeantwecouldexpecttoobserveauseof theproject’sresults,totheextentthattheparticipatoryprocess enabled actorstobemobilized andtointegratetheknowledge produced.Indeed,ifevaluationuseisexplainedbythefitbetween theevaluative strategyand contextual characteristics,then it is contingentontheevaluationprocessthatisdesignedandcarried out, as this article makes clear. This project illustrates how a transformative evaluation project can be designed when the approach selected is congruent with the evaluation context characteristics. However, we consider that the participative qualities,ontheirown,are insufficient toexplain theobserved evaluation use. We believe that using a deliberative process structuredaroundobjectivedataisalsoameansofrallyingthe actorsandgettingpastanydifferencesinperceptions.Therelative contributionofusingobjectivedataindeliberations,inrelationto the process itself of actors_’ participation, warrants further explorationinthefieldofevaluation.Thiswouldhelptoidentify moreclearlytherelativeeffectivenessofparticipatoryprocesses andothercomponentsoftheresearchstrategyincontextsthatare conducivetotheuseofresearchresults.

5.Conclusion

Thisevaluativeproject,whilesmallinscopeintermsofboth budgetandtimeframe,perfectlyillustratesthefactthatstrategic useoftheresearchprocesscaneffectivelyinfluenceconceptual andinstrumentaluseofresults.Thisarticleillustrateshowastudy orevaluationcanbeorganizedinsuchawaythatitbecomesin

itselfinterventional,asadvocatedbythePHIRmovement(Hawe& Potvin,2009;Morabia&Costanza,2012)andtherebycontributes notonlytothedevelopmentofknowledge,butalsotoimproving the problem situation. However, this project also raises other fundamentalquestions:Whatdeterminedtheproject’s effective-nessintermsofresults use?Was ittheparticipatoryprocesses used,theuseofobjectivedatainthedeliberations,orthecontext thatwasconducivetousingresearchresults?Probablyallthreeof thesecomponentsplayeda role,buttherelative importanceof eachremainstobeexplored.Variousauthorshaveanalyzedthe determinants of research results use (see the synthesis of Contandriopoulos,Lemire, Denis, &Tremblay, 2010)in relation toevaluativetheories (Contandriopoulos &Brousselle,2012)or havedissectedparticipatoryprocesses(Weaver&Cousins,2004). However,westillknowverylittleaboutthemechanismsthat,in participatory processes and in use-conducive contexts, really determinetheeffectivenessofresearchprocesses(Henri&Mark, 2003;Shulha&Cousins,1997),and thereiscertainlya research agendatobefoundhereontheoriesandpracticesinthefieldof evaluation.

AppendixA.Supplementarydata

Supplementary data associated with this article can be found, in the online version, at http://dx.doi.org/10.1016/j. evalprogplan.2016.01.004.

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