GLOSSARY - SPRINT Projectsprint-project.eu/wp-content/uploads/2015/12/SPRINT-Glossary-1-1.pdf ·...

Prof.MartinKnapp-LondonSchoolofEconomicsAlanGlanz-LondonSchoolofEconomicsDr.AdamRichards-SocialValueUK

GLOSSARY

SocialProtectionInvestmentinLong-TermCareHORIZON2020-GrantAgreementNo649565

D.2.2Glossary 1

T a b l e o f C o n t e n t s

AcronymsandAbbreviations.......................................................................................................2

1 Introduction.........................................................................................................................3

2 Methods..............................................................................................................................3

3 KeyConcepts.......................................................................................................................3

3.1 AssistiveTechnology...........................................................................................................4

3.2 Benchmarking.....................................................................................................................5

3.3 CareProviders.....................................................................................................................5

3.4 CostsofCare.......................................................................................................................6

3.5 EconomicEvaluation...........................................................................................................7

3.6 Equity................................................................................................................................10

3.7 Long-termCare.................................................................................................................11

3.8 MixedEconomyandMarketisation..................................................................................11

3.9 OutcomeMeasures..........................................................................................................12

3.10 PerformanceAssessment.................................................................................................13

3.11 Prevention........................................................................................................................13

3.7 QualityofCare..................................................................................................................14

3.8 QualityofLife....................................................................................................................15

3.9 Rehabilitation...................................................................................................................16

3.10 SocialInvestment..............................................................................................................16

3.11 SocialReturnonInvestment(SROI)..................................................................................18

3.12 Stakeholders.....................................................................................................................19

3.13 (Non-market)Valuationmethods.....................................................................................20

5 References.........................................................................................................................21

Acknowledgments.....................................................................................................................23


D.2.2Glossary 2

AcronymsandAbbreviations

ADL Activitiesofdailyliving

ASCOT Adultsocialcareoutcomestoolkit

CBA Cost-benefitanalysis

CEA Cost-effectivenessanalysis

CUA Cost-utilityanalysis

DALYs Disability-adjustedlifeyears

IADL Instrumentalactivitiesofdailyliving

ICT Informationandcommunicationtechnology

LTC Long-termcare

OECD OrganisationforEconomicCo-operationandDevelopment

QALYs Quality-adjustedlifeyears

SCRQoL Socialcare-relatedqualityoflife

SIP SocialInvestmentPackage

SPRINT Socialprotectioninvestmentinlong-termcare

SROI Socialreturnoninvestment

WP Workpackage


D.2.2Glossary 3

1 Introduction

TheSPRINTprojectaimstogivemeaningtotheconceptofsocial investmentasappliedtolong-termcareprovision.TosupporttheSPRINTproject,thisdeliverableexploreskeyconceptsthatwillbe used in the project and their application within the project. It aims to set out a commonvocabularytosupportgreaterunderstandingofthenotionofsocialinvestmentinlong-termcareandrelatedissues.

These concepts cover key aspects of the SPRINT project, from social investment (WP2; Lopez2017), economic costs (WP4), social impacts (WP4) and return on investment (WP5). The coreconcept of the SPRINT project is that of “social investment in long-term care”. This concept isexploredindetailintheaccompanyingConceptualReportonLong-termCare(D2.1;Lopez2017).

2 Methods

Following identification of the key concepts through dialogue among members of the SPRINTconsortium, a range of individual experts and sources of commentary on and use of theseconceptswasconsulted.

3 KeyConcepts

There is some variation in the terms used when describing long-term care, social investment,economicevaluationsandotherrelevantconcepts.Forexample, theterm‘socialcare’mightbeequivalentto‘socialwork’insomecountries.Conceptsaresetouthereintheformtheyaremostwidelyrecognisedinlong-termcareacrossSPRINTpartners’countries.

SPRINT partnerswill drawupon this deliverable as a resource for authoritatively defined termsandconcepts.ThiswillprovideaconsistentapproachwithinandacrossworkpackagesasSPRINTprogresses. While, in one sense, the availability of this Glossary means that some of theconceptualworknecessaryatfuturestagesoftheSPRINTresearchprogrammehasalreadybeendone, it remainsthecasethatanumberof theconceptsoutlinedbelowwillneedtobe furtheroperationalisedintermsofvariablesorindicatorsforspecificapplications.IntheviewofSPRINTpartners this is best done within the relevant work package as research plans become fullycrystallised.ThedescriptionsanddefinitionsofkeyconceptssetoutbelowwillserveasaframeofreferenceandprovideacommonvocabularyfortheSPRINTresearchprogrammegoingforward.


D.2.2Glossary 4

Concepts are listed in alphabetical order. There is considerable interconnection betweenmanyconcepts,asnotedinthedescriptions.

3.1 AssistiveTechnology

Assistive technologies have been available formany years. They generally use information andcommunicationtechnology(ICT)tosupportpeoplewithhealthand/orsocialcareneedsremotely,oftenintheindividual’sownhome,althoughthereisnowgrowingexperimentationandutilisationinother settings such asnursinghome facilities, andon amobilebasis. (Parts of this entry areadaptedfromBarlowandKnapp(2014).)

Development of assistive technologies has been driven, on the supply side, by technologicaladvances insensingequipmentanddataprocessing,andon thedemandsidebygrowingpolicyconcerns about the affordability of conventional health and social care arrangements forsupporting older people as populations age. Another demand-side factor has been growth inexpectationsaboutwhatindividualswithcareneedsshouldreceive,bothintermsoftheamountandqualityofcare,butalsointermsofmorepersonalisedsupportarrangements.

Therearemanytypesofassistivetechnology,ofvaryingdegreesofcomplexity.Theyaredeliveredinmanydifferentways, includingmobilephones,smartsensors,consumerdevices (e.g. ‘Fitbit’),personalcomputersandtelevision.Theyaredesignedforavarietyofdifferentpopulations,withavariety of different health and care needs. Terminology is also wide and includes telecare,telehealth, telemonitoring, homemonitoring, telemedicine, assistive technology, assisted livingtechnology,welfaretechnology,remotecareandsmarthomes.Theseandothertermsareoftenused interchangeablytodescriberemotedeliveryofhealthand/orsocialcaretopeopleoutsideconventionalcaresettings.Forexample,arecentscopingreviewbyLorenzetal.(2017)mappedexistingandevaluatedtechnologiesthatsupportthelifeandcareofpeoplewithdementia,theirunpaidcarersandpaidcarers,andotherprofessionals:therewasanimpressiveplethoraofnewtechnologiesbutonlyatrickleofrobuststudiesoftheireffectivenessorcost-effectiveness.

Adefiningfeatureoftheseassistivetechnologiesisconnectivitybetweenthelong-termcareuserand(paid)carestaffdeliveringcareandtreatment.Thepurposeoftheconnectivityistoprovidebetter flows of information about individuals and data to help with their care. Assistivetechnologies could deliver: information and advice; safety and security monitoring; vital signsmonitoring; or lifestyle monitoring (e.g. tracking movement). These technologies involve morethan just the deployment of physical devices; they usually need to be accompanied byorganisational and service delivery changes underpinned by interactive and non-interactivetransmissionofdigitaldata.


D.2.2Glossary 5

Twosalientconsiderationsaboutassistivetechnologiesshouldbeemphasised.First,thespeedoftechnologicaldevelopment is rapid, so thatevaluationsmight sometimesbeoutofdateby thetime they are completed. Second, technology developers and suppliers, as well as public andprivatepurchasers,areincreasinglylookingtocustomiseorpersonalisetechnologiestofitbetterwiththeneeds,circumstancesandpreferencesofindividualswithlong-termcareneeds,andalsowith the care or support setting (where appropriate). Both of these considerations can causecomplicationswhenthinkingaboutsocialinvestment.

3.2 Benchmarking

Benchmarking refers to the process of comparing the performance of an individual worker,service,organisationorsystemagainstanagreedstandard.Thecriteriaformakingthecomparisoncouldthereforeincludeanyofthecriteriadiscussedlater inrelationtoperformanceassessment(effectiveness, efficiency etc.). The standard could be set externally, or could be defined byreferencetotheperformanceofothersimilarworkers,services,organisationsorsystems(suchasthemeanlevelofperformance,orthirdquartilelevel,etc.).Theaimofbenchmarkingistohelpaservice,organisationorsystemtoimproveitsperformance.

3.3 CareProviders

Thereareanumberofcareprovidersinvolvedinlong-termcare.Thereport–TheRoleofPublicandPrivateActorsinDeliveringandResourcingLong-termCare(D2.3)–discussesthisindetail.

Formalcare

FormalcareisthetermgiventotheLTCservicesdeliveredbypaidstaff,employedthroughsomekind of formal entity (onewith a constitution, formal set of rules, legal incorporation or othernationallydeterminedrequirement).Formalcarershaveemploymentcontractsthatspecifytheirdutiesandcareresponsibilities,theirhours,payandentitlements.Someformalcarestaffwillhaveprofessionalqualifications,ormayneedtobetrainedand/orlicensed(seeD2.3).

Formalcareprovidersmaybeinthepublic(stateorgovernmental)sector,theprivatenon-profitsector (i.e. constitutionally independent of government, non-profit distributing and with ameaningful degree of voluntarism), the private for-profit sector (again constitutionallyindependentofgovernment,butnowwiththeabilitytodistributeprofitsamongowners)orinagrowingvarietyofhybridorganisations(Anheier2005).


D.2.2Glossary 6

Therearequitemarkeddifferencesbetweencountries,butacommoncoreof formal long-termcare services canbe recognised, including:needsassessmentprocesses; informationandadviceservices; self-help support groups; respite care; crisis management services; day centres andprogrammes; support forpeople in theirownhomes (‘homecare’, includinghomehelp,meals,communitynursing);nursinghomeandresidentialcareprovision;andavarietyofhousing-with-supportservices(suchas‘shelteredhousing’and‘extra-carehousing’).

Informalcare

Theterm‘informalcare’hasanumberofdifferentdefinitions;itgenerallyreferstocaredeliveredbyindividualswhohavenotreceivedformaltrainingincaredelivery.Informalcarers(sometimescalled simply ‘carers’ or ‘caregivers’) are frequently partners, family members, friends orneighboursof recipients,providing careand supportona regularbasis, typicallyathome.Theycan be unpaid or paid, either in cash or kind(adapted from Freeman et al. 2017.) The OECDdefinitionof informalcarers is ‘individualsprovidingLTCservicesonaregularbasis,oftenonanunpaid basis and without contract, for example spouses/partners, family members, as well asneighbours or friends’ (Colombo et al. 2011). (It should be noted that terminology is notuniversallyagreed,andtheterm‘informal’carerisnotlikedbysomecarergroupsintheUKandnownotoftenused.)

AcrossEuropeandtherestof theworld, theprovisionof informal long-termcarefaroutweighstheprovisionof formal care. Friends and family, particularlywomen, are themainstayof everylong-term care system. A number of countries now have policy frameworks to support andencourageinformalcarers.DeliverableD2.4describesvariationsininformalcareprovisionacrossEuropeancountries.

3.4 CostsofCare

Whenconsideringnewinvestmentinlong-termcare,andinparticularwhenevaluatingaspecificintervention, cost will always be a key component. Costs can be measured either broadly ornarrowly,dependingonthepurposeofthediscussion,decisionorstudy.Thepurposemaybetoinformresourceallocationdecisionswithinaparticularagency(suchasamunicipalityoraprivatesector provider agency), or in a wider care system in a city, covering all provider sectors andfundingsources,bothpublicandprivate.Anotherpurposemightbetoconsider thevalueofaninvestmenttothewholesociety.Thecoststobemeasuredwouldprobablyneedtobedifferentineachofthesecases.

Adistinctionissometimesmadebetweendirectandindirectcosts.Directcostsareincurredbythe‘main’organisationorsector,whileindirectcostsareincurredbyothersectors(suchashealthcare


D.2.2Glossary 7

orhousing,orperhapsbyindividualserviceusersorfamilies).Thedistinctionbetweenthetwoisnot always easy tomaintain, and is anyway context-specific. Amore useful way to distinguishdifferentcostelementswouldbetoseparatethefollowing:

• costsforthelong-termcaresectornarrowlydefined:thesewouldbetheresourcesneededtoorganise and operate the intervention (service or programme), andwould include variableelementssuchascostsofstaffsalaries,equipmentandtransport,aswellasfixedoroverheadelements,suchascostsassociatedwithbuildingsandothercapitalinputs;

• costsforotherservicesectors,suchashealthcare,housingorcriminaljustice;

• costs for people who use services and their families, such as out-of-pocket payments forservices,travelcosts,orlostincomebecauseofunpaidcarecommitments;

• costsofproductivity lossesbecauseofdisruptionstoemploymentpatternsforserviceusersorcarers,e.g.fromshort-orlong-termabsenteeism,reducedperformancewhileatwork(so-called ‘presenteeism’), early retirement or reduced opportunities for career development;theseproductivitycostsmightbeincurredbyemployersandthenationaleconomy,butmightalsoaffectanindividual’searningsandhouseholdincome.

Inmeasuringthosecostsinpractice,thetheoreticallycorrectapproachistomeasurethelong-runmarginalopportunitycostsofresources(Knapp1984).A long-termmeasureensuresthatalong-term (i.e. multi-year) perspective is taken when considering investment, while short-termperspectivesanddecisionscouldbemisleadingbecausetheymightoverlooktheneedforproperinvestment in durable physical or human capital. A marginal measure is needed: this is theadditional cost of producing one more unit of service (e.g. one more home care visit or oneadditionalday’sresidenceinanursinghome).Thewordopportunityreferstothefactthatusingaresourceinonewaymeansthatitcannotbeusedinanother:ineconomics,anopportunitycostisthe value of the opportunity forgone by not using the resource in its best alternative use,whatever thatmaybe.Theopportunitycostvaluewilloftennotbe thesameas theamountofmoneyactuallyspent(the‘accountingcost’).

3.5 EconomicEvaluation

Economicevaluationoffersonewaytohelpdecision-makerswithdifficultdecisionsabouthowtousepublicandprivateresources–whicharebecomingincreasinglyscarceinsomecountries–soas to improve strategic decision-making, care practice and ultimately the lives of individualsaffected by long-term care needs. It offers a structured, conceptually sound way to identify,measureandcomparethecostsandoutcomesoftwoormoreinterventionsorcoursesofaction,andalso(insomecases)awaytotrade-offimprovementsinoutcomesagainstincreasesincosts.(ThissectionisadaptedfromKnappandKettunen(2017)andKnapp(1984).)


D.2.2Glossary 8

Twoofthekeyquestionsthatwillfrequentlybeaskedwhenconsideringwhethertorecommend,commissionordeliveraparticularinterventionare:doestheinterventionwork,andisitworthit?(Hereweustheterm‘intervention’torefertoservices,preventivestrategies,specifictherapiesorconfigurationsofsupportthatarerelevantto long-termcare.)The‘Doesitwork?’questionaskswhether the intervention is effective in achieving outcomes (which are defined and discussedbelow),suchasimprovingindependenceorwellbeing.Iftheanswertothisfirstquestionislikelyto be yes (i.e. the intervention appears to be effective, ideally because robust research hasdemonstratedthatbetteroutcomesarelikelytobeachieved),thenthesecondquestionneedstobe asked. The ‘Is it worth it?’ question asks whether the outcomes are worth the resourcesneededtoachievethem.Thesecondquestioniswhataneconomicevaluationseekstoaddress.Bothquestionsneedtobeansweredbyreferencetoacomparator:doestheintervention‘work’betterthanthealternative(wherethealternativecouldbe‘doingnothing’),andaretheoutcomes‘worthit’byreferencetohowtheresources(money)couldotherwisehavebeenspent.

There are therefore three principal components to a cost-effectiveness evaluation: (a) two ormoreinterventionsthatarebeingcompared;(b)theoutcomesofeachofthem;and(c)thecostsassociatedwitheachofthem.

Economic evaluations come in different forms: in health and social care contexts the mostcommonarecost-effectivenessanalysis,cost-utilityanalysisandcost-benefitanalysis.

Cost-effectivenessanalysis

If the policy, practice or research question to be addressed to social investment is solelyconcernedwith improvingthewellbeingofaparticulargroupofpeople–sayolderpeoplewithdementia–then,foraneconomicevaluation,informationisneededonthecomparativecostsofthevarious interventionsbeingconsidered,andalsoonthecomparativeoutcomes,whichcouldbemeasured in termsof (say)wellbeing,behaviour,cognition, independence in theactivitiesofdailyliving.Thistypeofevaluationisusuallyreferredtoasacost-effectivenessanalysis(CEA)inhealtheconomics,andthesamelabelcanbe(andhasbeen)usedinsocialcarecontextsformorethan30 years (Knapp1984).ACEA tells decision-makerswhat courseof actionmost efficientlymeetsaspecificsetofclinicalneeds.

We should also note that the term ‘cost-effectiveness’ is used in health economics to describebothaspecifictypeofeconomicevaluation(ashere)aswellastorefergenericallytothegroupofalleconomicevaluations.

Cost-utilityanalysis

Manydecisionsthatneedtobetakenwithregardtothedeploymentofresourcesraisebroaderquestions. For example, how should resources be allocated between supporting adults with


D.2.2Glossary 9

learningdisabilitiesandolderpeoplewithdementia?Acost-effectivenessanalysismaynotbeabletohelpinthisinstancebecausedifferentoutcomemeasureswouldbeneededforthetwogroupsof service users. The decision-maker therefore needs a common measure of outcome that isrelevant across both groups. In healthcare research, two commonly used genericmeasures areutility – operationalised in terms of quality-adjusted life years (QALYs) – and disability – oftenmeasured by disability-adjusted life years (DALYs). Using this kind of generic outcomemeasureallows the evaluation to addressmore strategic issues. This typeof evaluation is often called acost-utilityanalysisbyhealtheconomists.Insocialcare,therehasnotbeenanequivalenttotheQALYuntilrelativelyrecently,buttherearenowtwosuchgenericoutcomeconstructsbeingusedinsomecountries:socialcare-relatedqualityoflife(SCRQoL)asmeasuredbytheAdultSocialCareOutcomesToolkit(ASCOT;Nettenetal.2012)andwellbeingasmeasuredbyICECAP(Grewaletal.2006).[SeeOutcomemeasuresbelow.]

Cost-benefitanalysis

Some decision-makers need to decide how to allocate expenditure between social care,education, housing or other interventions, in the hope that available resources can be used toachieve their maximum impact. Until recently, the only outcome measure considered to beappropriateforsuchbroadcomparisons(alongsidethecosts)wasmonetary:theconsequencesofthedifferentprogrammeswouldneedtobeconvertedtomonetaryvalues.Thistypeofevaluationis calledacost-benefit analysis (CBA) inhealtheconomics contexts. Inmoregeneral evaluativeparlance,thetermcost-benefithasalsobeenusedinmoregenericways(torefertoalltypesofeconomicevaluation)aswellasinnarrowerways(suchaswhencomparingtheamountofmoneyexpendedwiththeamountthatissubsequentlysaved).Cost-benefitanalysesoftheconventionalvariety (with monetary benefits) are generally very difficult to undertake in long-term carecontexts,becausethemostrelevantoutcomes(suchaspersonalfunctioningandindependenceindailyliving)arehardtoconvertintomonetaryvalues.Recently,growingattentionhasbeengivento the possibility of expressing these common outcomes in terms of a common measure ofwellbeing (e.g. the current work of Richard Layard and others at LSE). See also the section onsocialreturnoninvestmentbelow.

Discounting

Ifcostsareincurredovermorethanoneyear,orifoutcomesflowfromaninterventionovermorethanoneyear,therewillusuallybeaneedtoadjustfuturefigures(costsoroutcomes)sothattheyarecomparabletopresentvalues.Thereasonforthisisbecausemostpeopleattachlowervaluetofuturecoststhantheydotopresentcosts;i.e.€1,000nextyearisworthlesstomethan€1,000today,evenafteradjustingforpriceinflation.Thisisoftencalledtimepreference.


D.2.2Glossary 10

An economic or other evaluation should therefore generally discount (as in the sense of‘downplay’)thevalueoffutureeurossoastobeabletocomparethemtotoday'seuros.Therateof discount rate used in an evaluationmight followwhat is recommended at national level forpublicinvestmentappraisals.

3.6 Equity

Equity relates to the extent towhich outcomes, access to outputs and payments for them aredistributed fairly across individuals, regions or parts of a society. Most long-term care andhealthcare systems are inequitable in that their benefits arenot distributed inways thatmightwidely be seen as fair, due to the influence of social, economic, political or underlyingdemographic factors. Access to services (and, hence, access to the potential impacts of thoseservices in terms of better outcomes) may be unfairly distributed by gender, ethnicity, age,language,religion,income,socioeconomicgrouporplaceofresidence.

An examination of equity requires that a definition must be specified for ‘fairness’. Equity isgenerally not the sameasequality in theprovisionof services, as peopledonot have identicalneeds, so that an equitable allocation of resources would be likely to require giving moreresourcestopeoplewithgreaterneeds.Similarly,itmightbeseentobemoreequitabletoensurethatindividualswiththelowestabilitytopayforcareareaskedtopayloweramountsthanthosewith greater ability to pay (i.e. with greater wealth or higher incomes). The most commonlydiscussed aspects of equity are (a) whether incidence and prevalence of need are linked tosocioeconomicstatus,ethnicityorotherpersonalcharacteristics;(b)whetheraccessto(evidence-based) interventions is linked to type and level of need, as well as to these personalcharacteristics;and(c)whetherindividualfinancialcontributionsarelinkedtoabilitytopay.

How then is the concept of ‘fairness’ chosen? Equity could be defined or operationalized byreferencetovariouspoliticalphilosophies.Forexample,conventionalwelfareeconomicsisoftenassociatedwith utilitarian philosophy, seeking that distribution of resources that will maximizetotalwelfare (wellbeing) (Barr 2014). Rawls (1972) is one of a number of philosophers to havecriticisedutilitarianism;hesuggestedthemaximinprinciplethatpoliciesshouldbedesigned(andhencesocialinvestmentsplanned)soasmaximizethewellbeingoftheleastwell-offmembersofsociety. Collectivist philosophies emphasise equality, and libertarians emphasise autonomy andfreedomofchoicewhenmakejudgementsaboutequity.Thesearejustsomeexamplesofequitytheories.


D.2.2Glossary 11

3.7 Long-termCare

Long-termcarereferstotheorganisationanddeliveryofabroadrangeofservicesandassistanceto people with a reduced degree of functional capacity, physical or cognitive, and who areconsequentlydependentforanextendedperiodoftimeonhelpwithbasicactivitiesofdailyliving(ADL).Thispersonalcarecomponentmaybeprovidedincombinationwithhelpwithbasicmedicalservicessuchasnursingcare,aswellaspreventionorrehabilitationorpalliativecare.Long-termcare services can also be combined with lower-level domestic help or help with instrumentalactivitiesofdailyliving(IADL)suchasbathing,dressing,eating,gettinginandoutofbedorchair,movingaroundandusingthebathroom.Althoughpeopleofallagesmaybecomedependentonlong-termcare, the riskofdependency for those inolderage is farmore significant. Long-termcareservicesarecrucialtomanypeopleinolderagegroups,whoseneedsmayresultfromlong-standingchronicconditions,causingphysicalormentaldisability(OECD2013).

3.8 MixedEconomyandMarketisation

Someservicesusedbypeoplewith long-termcareneedsareprovidedbyor locatedwithin thestate(public)sector,somebyprivate(for-profitorthirdsector)entities,andsomebyfamiliesorthroughinformalcommunityarrangements.Thismultiplicityofsectorsandservices–sometimescalledthemixedeconomyofprovision - ischaracteristicofall long-termcaresystemsinEurope,althoughthebalancesbetweenthesectorsvariesagreatdealfromcountrytocountry.Preventionstrategiesmight be dominated by the state (locally, regionally or nationally), butwill still needinputsfromemployersandlocalcommunities(the‘socialcapital’effect).Thefor-profitandthird(non-profit)sectorsaremajorprovidersofdayandresidentialcareinsomecountries.

Underpinning most formally based provision are the many and various contributions of familycarersandvolunteers.Thesearenot ‘free’ resources,ofcourse,because theycan imposequitehighopportunitycostsonfamilies.

Distinctionsbetweenthesectorsarepertinentbecauseproviderswithdifferent legal formsmaybehave differently in responding to various incentives. Different governance structures andmotivationsmayaffecttheirmodusoperandi,theirpatternsofresourcedependency,theirchosenstylesofmanagement,theirabilityandwillingnesstorespondtochangesinmarketopportunities,pricing regimes and competition. They might therefore also have divergent costs, ‘casemix’,quality of care and perhaps even user outcomes. Different provider types may also vary withrespecttothewaystheyinitiate,cultivateandreinforcetrustandreputation,withimplicationsforcommissioning.


D.2.2Glossary 12

Each provider of long-term care services could have a number of funding sources, includinggovernment(taxrevenues),socialinsurancefunds,voluntary(private)insurancecompanies,usersand families (out-of-pocket payments). Those providers might also benefit from the inputs of(unpaid)volunteers.Informalcarebyfamilymembersorothersis‘resourced’bytheunpaidinputsof those individuals. This has been called themixed economy of funding. Different sources offunding come with a host of potentially different conditions, constraints, incentives andopportunities.

Cross-classifyingthemainfundingandprovidertypesgeneratesamatrixoftransactiontypes(notillustratedhere).Thesemultifarioustransactiontypesremindusoftheinherenteconomic,socialand political complexity of most pluralist long-term care systems. Each transaction type hasaccompanyingneedsforappropriatelegislativeframeworkstocontrol,auditandmonitorthelinksbetween funding and provision. A version of themixed economy of welfare matrix was firstproposedbyJudge(1982)andfurtherdevelopedinJudgeandKnapp(1985)andusedtodescribearapidlychanginglong-termcaresysteminEnglandbyWistowetal(1994,1996).

Against this background, there has been more recent focus on what has been called‘marketisation’.Thetermhasanumberofdifferentmeanings,eachofthemreflectingsomepartofamixedeconomyofwelfare.Forexample,AntonnenandMeagher(2013)usethetermtoreferto apolicy change thathas ‘twodimensions:whetheror notmarketpractices and logics (mostnotably competition) are used in organising services and whether or not private actors,particularly for-profit companies, are involved in providing service’ (p.16).Marketisationby thisdefinition, therefore, refers to a particular sub-set of the various transaction types containedwithinabroadermixedeconomyofwelfarematrix.ManyEuropeancountrieshaveseenamovetowardsgreatermarketisationof long-termcare services forolderpeopleandotherpopulationgroups.

3.9 OutcomeMeasures

The outcomes achieved by a long-term care intervention (whether it is a care service, specifictherapy,preventionprogrammesorothertypeofintervention)shouldbedefinedbyreferencetotheindividualswhoarepotentiallyaffectedbythoseinterventions,andspecificallybytheextenttowhichtheirneedshavebeenmet.Theseoutcomesthereforerelatebothtotheindividualwhois the primary recipient of care and also to their unpaid family andother carers. Synonyms foroutcomesinclude‘finaloutcomes’and(especially ineconomicevaluation)‘effectiveness’(Knapp1984,KnappandKettunen2017).

When assessing the outcomes of a long-term care intervention, there are potentially manydimensionstotakeintoconsideration.TheAdultSocialCareOutcomesToolkit(ASCOT;Nettenetal.2012)offersaveryhelpfulframeworkforidentifyingthosedimensions,aswellasameansby


D.2.2Glossary 13

which to measure achievement along each of them. There are eight domains to the ASCOTapproach:(a)tofeelcleanandcomfortable;(b)togetenoughnutritiousandappropriatefoodanddrink;(c)tofeelsafeandsecure;(d)tohaveaccommodationthatiscleanandcomfortable;(e)tohave control over one’s daily life and activities; (f) to be sufficiently occupied in meaningfulactivities; (g) to feel involved and to have meaningful relationships; and (h) dignity - not toexperience any negative psychological impact of support and care on one’s personal sense ofsignificance.

Therearemanyothertoolsformeasuringlong-termcareoutcomes,spanningsomeorallofthesesameeightdomains.

3.10 PerformanceAssessment

Performance assessment is a review of howwell an individual, service, organisation or systemundertakesadefinedtask.Manycriteriacouldbeusedtospecifymorepreciselywhatismeantby‘howwell’. These criteriamight include: effectiveness in terms of delivering a particular set ofservicesorbelterqualitycare(seebelow);improvingoutcomesforpeoplewhouseservices(seeabove);efficiency(forexample,asmeasuredinaneconomicevaluation–seeabove);equity(seeabove); empowering individuals to take more control over their lives; protecting vulnerableindividuals from abuse or discrimination; improving social inclusion; promoting social solidarity;andensuringlonger-termsystemsustainability.

Assessmentofperformance couldbeundertaken for ahostof reasons: to informa contractualagreementormonitorcontractcompliance;forinspectionpurposes;toguidelocalpurchasingorcommissioningdecisions;toinformbroaderstrategicpolicydiscussions;orsothatpeoplewhouseservicesortheirfamiliescanmakejudgements.Someperformanceassessmentwillthereforebequite formal and structured, while somewill be relatively informal. Some performance criteriamightbeobjectivelyassessedwhileotherswillrelyonmoresubjectiveviews.

3.11 Prevention

Prevention is usually defined as an action aimed at eradicating, eliminating or minimising theimpactofadiseaseordisability,oraimedat slowingdownthedecline in functioning,healthorqualityoflifeassociatedwithdiseaseordisability.Thefocusofpreventionisthereforeontacklingcausesandriskfactors.

Differenttypesofpreventionarecommonlydistinguished.Primarypreventionisactiontakenpriortotheonsetofadiseaseortheemergenceofaneed,withtheaimofreducingorremovingthe


D.2.2Glossary 14

possibility that the disease or need will ever occur. This could include action to inhibit theemergenceofriskfactorsthemselves,suchaspoorenvironmental,economicorsocialconditions.Thisissometimescalledprimordialprevention,andisfocusedonthebroadhealthorsocialcaredeterminantsratherthanindividualexposuretothem.

Secondary prevention is action which halts the progress of a disease or other condition at itsincipientstage inordertopreventcomplicationsarising.Successfulsecondarypreventionwouldthenrestorehealthorwellbeingbytreatingadiseaseorrespondingtoaneedbeforeirreversiblechangestakeplace.

Tertiarypreventionaimstoreduceorlimittheconsequencesofadiseaseorneed,andtopromoteadjustmentbyanindividualtoirremediableconditions.Itisthereforeconcernedwithsupportingindividualstocopewithormanagetheir long-termhealthorsocialcareproblemsorpermanentimpairments,inthatwayhelpingthemtoimprovetheirabilitytofunctionindependentlyandtheirqualityoflife.

Another type of prevention is sometimes distinguished: quaternary prevention is defined asprotection from unnecessary medical or other care activity that could harm individuals orpopulations. An example in the health field would be over-medicalisation of what might beconsidered a ‘normal’ human condition or supplier-induced demand. In the social care area itcould include creating unnecessary dependency by not empowering an individual to makeindependentdecisionsintheirlives.

3.7 QualityofCare

Acommonlydiscussedindicatorofachievementinlong-termcareisqualityofcare,butitneedstobe seen as only an ‘intermediate’ measure of benefit. This is because quality of care, whilepotentiallyanimportantdeterminantofuseroutcome,isnotdirectlyameasureofthatoutcomeitself. It is concernedwith staff-client ratios, the suitabilityof thebuilt environment, staff-clientrelationships, social environment, safety and so on. Good quality of care by those criteria ispotentially important as an achievement, and goes beyond simply measuring the resourcesexpended on or devoted to long-term care, but the association between any quality of careindicatoranduseroutcomesislikelytobeheavilycontext-specificandindividual-specific(DaviesandKnapp1981).Inusinganyqualityofcareindicator(e.g.inaninspectionprocess,orinwritingcontractsforpublicsectorcommissioning),itisthereforefundamentallyimportanttobeconfidentthatthe indicator isstronglyassociatedwithoutcomesasexperiencedinthe livesofthepeoplewhousethatcare.

Anumberofmeasuresofqualityoflong-termcarehavebeensuggested.OneofthebestknownformalmeasuresistheRAI(ResidentAssessmentInstrument;Hawesetal.1997).Otherqualityof


D.2.2Glossary 15

caremeasureshavenowbeendevelopedinmanyEuropeanandothercountries(summarisedanddiscussedwellinOECD2015,especiallychapter3;andseevolume16ofEurohealthpublishedin2010forsomecountryexamples).InEngland,thecurrentapproachtoqualityassuranceinlong-termcareincludesassessmentofuserexperience:theUserExperienceSurveysaskaboutaspectsofthecareprocess,suchastimelinessandflexibilityofcare,characteristicsandbehaviourofcareworkers,andincludeaquestiononsatisfactionwithcare(Malley2010).Inthisway,theapproachtriestoovercomeamajorlimitationofqualityofcaremeasuresofbeingpoorlyconnectedtohowpeople with care needs live their lives and view the support the receive. These processes arelinkedtoperformanceassessment(seeabove).

Giventheinherentpractical(andoftenconceptual)difficultiesinmeasuringuseroutcomesfromlong-termcare,qualityofcaremeasuresmightprovideanintermediateindicatorofachievement,buttheirlimitationsneedtoberecognised.

3.8 QualityofLife

The Institute ofMedicine (2001) in the US defined quality of life it as ‘subjective or objectivejudgmentconcerningallaspectsofanindividual'sexistence,includinghealth,economic,political,cultural,environmental,aesthetic,andspiritualaspects’.NarrowerdefinitionshavebeenofferedIn particular contexts, such as health care,where the termhealth-related quality of life is nowwidelyemployedtorefertothoseaspectsofqualityoflifethatmightbeinfluencedbypoorhealthorbyhealthcare.Disease-specificquality-of-lifemeasureshavealsobeensuggested,focusingonthoseaspectsofanindividual’slifethatmightbeaffectedbytheillnessordiseaseinquestion.Inthedementiaarea,forexample,itisrecognisedthatqualityoflifeextendsbeyondthecognitiveorothersymptomsof thecondition (Banerjeeetal.2006),but thatmostgenerichealth-relatedquality of life measures fail to pick up those aspects of life affected by the condition or itssuccessful treatment, leading to the development of dementia-specific tools (e.g. Smith et al.2007).

Thesehealth-focusedmeasureswillgenerallynotbesufficienttocapturechangesinqualityoflifethatresultfromlong-termcare,becausesuchcareisconcernedprimarilywithhowanindividualfunctionsandtheirwellbeing, rather thanwiththebiomarkersorsymptomsofadisease.Therehave consequently been a number of suggested ways to conceptualise quality of life that arerelevant to the long-term care context. Sloane et al. (2005) and Rodrigues (2017) describe anumber of such approaches, and discuss some of the most widely used measures. Most suchconceptualisationsidentifythreebroaddomainsasrelevant:physical,psychologicalandalsosocialdimensions.Thereisalsoconceptualandoperationaldiscussionaboutwhoisbestplacedtojudgequalityoflifealongthesedimensions,giventhatsomepeoplewhouselong-termcaremighthavecognitive or other difficulties in reporting accurately their state of psychological or other


D.2.2Glossary 16

wellbeing.Consequently,LTCqualityoflifemeasuresmightbecompletedbytheindividualserviceusers themselves, a familymemberwho knows themwell, another unpaid carer, amember ofcare staff ina residentialorother setting,orby thirdpartyproxies.Anotherapproach is tousedirectbehaviouralobservation.Eachofthesemethodshasitsadvantagesanddisadvantages.

Quality of life is closed linked towellbeing (or psychologicalwellbeing). Terminology in the LTCfield israther loose,andthesedifferenttermshaveoftenbeenused interchangeably.Therearehuge swathes of academic theoretical discussion and empirical research dedicated to theconceptualisation,definition,measurementandinterpretationofqualityoflifeandwellbeing,anditisnotpossibleeventosummarisethosedebateshere.Whatisimportantistorecognisethattheconsequences of LTC interventions or policies can impact upon both objective and subjectiveaspectsoflife,andthattherewillusuallybeaneedtodistinguishbetween(andideallymeasureboth) hedonic and eudaimonicwell-being. The former is linked to happiness or life satisfaction(‘pleasure attainment and pain avoidance’ according to Ryan & Deci, 2001), while eudaimonicwellbeing, in theAristotelian approach, emphasises processes of fulfilment and achievement ofpotential:itis‘livingwell’.QualityoflifeasoperationallydefinedinmanyLTCstudiescomesclosertoeudaimonicwellbeing.

3.9 Rehabilitation

Rehabilitationisaprocessoraction(service,therapyortraining)torestoresomeonetohealthornormallifefollowingillnessordisabilityor(inothercontexts)afterimprisonmentoraddiction.Ithelps the individual to regain lost skills and independence (fully or partly). The World HealthOrganizationwebsite(accessed10February2017)definesrehabilitationofpeoplewithdisabilitiesas ‘a process aimed at enabling them to reach and maintain their optimal physical, sensory,intellectual,psychologicalandsocialfunctionallevels.Rehabilitationprovidesdisabledpeoplewiththetoolstheyneedtoattainindependenceandself-determination.’ACochranereviewofphysicalrehabilitation operationaliased the concept as ‘Physical rehabilitation was defined as thoseinterventionsthataimtomaintainorimprovephysicalfunction’(Crockeretal.2013).

3.10 SocialInvestment

Investment is theallocationof current resources,whichhavealternativeproductiveuses, toanactivitywhosebenefitswill accrueover the future.Thebenefits take the formofproductionofgoodsandservicesthatareofindividualorsocial(public)benefit.Thecostofaninvestmentisthebenefitthatcouldhavebeenderivedbyusingtheresourcesinsomeotheractivity.Aninvestmentisjustifiedifthebenefitsanticipatedaregreaterthanthecosts.(Arrow1965)


D.2.2Glossary 17

An approach to investment in the present period that is intended to produce social (or public)benefitsratherthanpurelyfinancialreturnsinthefuturemaybedescribedassocialinvestment,sociallyresponsibleinvesting,socialimpactinvestmentorimpactinvesting(OECD2015).

The term social investment is more commonly used in Europe. Indeed, in February 2013 theEuropean Commission launched its ‘Social Investment Package’ (SIP) (European Commission2013).Thisofferedan innovativesocialpolicy instrument inthecontextofdemographicchangeandeconomicpressuresacrossEurope.Thesocialinvestmentapproachpromotespolicymeasuresthat frame welfare or public spending as investments aiming to enhance the stock of humancapitalstock,maintainsocialprotectionbuffersandenablepeopletoliveanindependentlife,andfacilitateflowinthelabourmarket(Hemerjick2015).

Thefundamentalpillarsofsocial investmentasapolicyparadigminvolveasignificantchange inthe core elements of the policy-making process inherited from the post-warwelfaremodels ofmany European states,moving froma focus on “repairing” the unforeseendamages causedbyevents to a focus on “preparing” individuals and families to address life chances and dealwithdisruptive events, preventing or lessening the damages they can cause. The philosophyunderpinningsocial investment involvesadvocatingforthreemainsocialpolicyfunctions:(i)thecreationofcapacities,whichinvolvesashiftinpolicyanalysisfromanexclusivefocusonpresentcosts to a focus on current and future impacts; (ii) addressing social risks within life-coursedynamics,whichinvolvesamovefromaclearcutdividebetweenthosethatpayandthosewhoarerecipientsofwelfareprovisiontoamoredynamicandbetteradjustedvisionofcontemporarysocialrealitywhereindividualshavedifferentstatusindifferentphasesoftheirlives;and(iii)thereconciliationofworkand family life,notonly responding to ideologiesofgender thatpressuretowardsgenderequalitybutalsoasapre-requisitetodealwiththeconsequencesofdemographicageingandtheneedtosecureeconomicandfiscalsustainability.

AnotherSPRINTreport–ConceptualReportonLong-termCare(D2.1;Lopez2017)–discussesthisindetail.

Socialinvestmentinlong-termcare

Thesocialinvestmentapproachappliestothewholelife-course,includingolderageandlong-termcare.Simultaneouslywiththelaunchofthe‘SocialInvestmentPackage’bytheEC,aCommissionStaffWorkingDocumentwaspublishedon ‘Long-termcare inageing societies–Challengesandpolicy options’ (European Commission SWD 2013a), calling for a ‘social investment-orientedstrategy’toaddressthespecificpolicychallengesoflong-termcareforolderpeople.ThefocusofSI inthiscontextison: initiativesthatpromote‘activeageing’,sustainingparticipationinsocietyand the economy; preventive strategies to reduce needs for care; or measures to improveefficiencyintheutilisationofcareresources.

InthecontextofSPRINT,socialinvestmentisdefinedas:


D.2.2Glossary 18

Welfareexpenditureandpoliciesthatgenerateequitableaccesstocaretomeettheneedsofageingpopulations,reducecurrentandfuturecostsofcare,improvequalityofcareandqualityoflife,increasecapacitiestoparticipateinsocietyandtheeconomy,andpromotesustainableandefficientresourceallocation.

This definition contains many elements that in themselves would merit extensive furtherconsideration–andtherebyconsiderablyextendthelengthofthisreport.However,anumberofkeytermsarefurtherdefinedbelow.

3.11 SocialReturnonInvestment(SROI)

Social returnon investment(SROI)has itsorigins inthethirdsector,originallydevelopedbytheRobertsEnterpriseDevelopmentFoundationin1996asaresponsetotheperceivedshortcomingsof CBA (Roberts Foundation 1996). From its inception, SROI has developedwith influences alsofromsustainabilityreportingandfinancialaccounting.

SROI is essentially a frameworkof sevenprinciples (SocialValue International 2015) thatplacesthe experiencesof stakeholders at the centreof analysis tounderstandwhathas changed as aresult of activities. Subsequently, the monetisation of direct and indirect changes, framed byconcernsofmaterialityandadesirenottoover-claimisdesignedtoincreasetheaccountabilityofdecision-makers.

SROIstudiesseek to takeaccountofvariousaspectsofpersonalandsocialwellbeing– tangibleand intangible – as experienced by a potentially wide variety of stakeholders. It has beensuggested that there are differences between SROI and CBA (Social Value 2014), but these aredifferences in process, implementation and stakeholder involvement, rather than fundamentaldifferencesinunderlyingapproach.

SROIaimstovalueoutcomesfromtheperspectiveofthestakeholder,andthiscouldbedoneforvariousnon-marketedconsequencesbyusingdifferenttechniques,suchasrevealedpreference,stated preference, or (more recently) wellbeing valuation techniques. (This last approach ismirrored in developments in relation to CBA; see above.) SROI also requires verification, auditprocess,usinganappropriaterangeofpossiblemethods.Theaimistoprovideinformationthatis‘good enough’, which means different levels of rigour according to use and audience. Puttingmonetaryvaluesonnon-marketgoodsischallenginginSROI(asitisinanyevaluation),especiallyinthelong-termcarefield,wheresocialvaluationstudiesarestillscarce.Consequently,resultsofdifferent SROIs are not always comparable. SROI has beenpromotedby theUKDepartment ofHealthasameasurementtoolespeciallyforsocialenterprisesinhealthandsocialcare(MillarandHall2013,SocialValueUK2014,TheSROINetwork2012).


D.2.2Glossary 19

SROIprinciples–appliedinSPRINT

Toeffectivelyappreciatethesocialvalueofactivities,itisrequiredthatallprinciplesofSROIareapplied.However,giventhenatureofSPRINTit isnecessarythattheseareadapted,sincedirectstakeholderinvolvementisnotfeasible.However,alldatathatwillbeincorporatedwillstemfromstakeholder engagement at thenational level and collatedby credible sources. Similarly, ratherthanbeingabletoenquiredirectlyastothecostsandbenefits(outcomes)ofLTCinterventions,extensive literature and evidence reviews have identified thematerial issues for consideration.The ability to understand what has changed is therefore satisfied, and the subsequent SROIprincipletovaluethethingsthatmatter isalsoaddressedusingmeansofvaluationsuchas life-satisfaction(well-beingvaluation)(seebelow).

Concernsofmateriality–thatwhichaddressesnotonlytheinclusion/exclusionofoutcomes,butalsoconsiderationofwhichstakeholdersaretobeincorporated–isagainaddressedthroughtheextensive review of existing literature and evidence conducted in SPRINT, as are matters thatensurethattheprincipletonotover-claimisincluded.

Allworkabidesbytheneedtoensuretransparency,anSROIprinciplethatensuresallsourcesofevidence are presented for scrutiny, as are all metrics, and any assumptions or estimations.Finally, the need to verify the result (another SROI principle) will be addressed through theinternalprocessesofSPRINTthat involveallpartnersandtheAdvisoryGroup,and is thatwhichensuresthatallotherprinciplesareappliedaccordingly.

3.12 Stakeholders

Within SPRINT, a stakeholder is any individual, organisation or other entity with an interest inlong-termcare.Thiswillincludedecision-makerssuchasgovernmentministers;electedpoliticians(national, regional or local); public/civil servants (in national, regional or local public bodies);quasi-governmental organisations; chief executives and boards of large and small providerorganisations and funding bodies; third sector (non-profit) organisations, small enterprises andsmall community groups that deliver, finance or broker long-term care; front-line workers inprovider bodies; organisationsor individuals that lobby for individual rights or better long-termcare.Thelong-termcaresectorspansnotonlythehealthandsocialcaresystems,conventionallydefined,butalsohousing,socialsecurity(welfarebenefits),employmentandothersystems.

Individualswithlong-termcareneedsandtheirfamiliesarethemostimportantstakeholders.


D.2.2Glossary 20

3.13 (Non-market)Valuationmethods

Statedpreference

Statedpreferenceapproachesaskpeopleto‘statetheirpreference’directlyforagoodorserviceusing questionnaire surveys. For example, contingent valuation surveys ask respondents theequivalent value through their willingness to pay for a good or service, or their willingness toacceptasacompensatingvalueforitsloss(FujiwaraandCampbell2011).Asthenamesuggests,contingent valuations are contingent on specific characteristics. For example, this could includethewillingnesstopayforaspecificincreaseinpersonalhealthoranimprovedlocalecosystem,orconverselythewillingnesstoacceptareductioninhealthorthedamagedlocalecosystem.

Revealedpreference

Revealed preference techniques examine theway inwhich people reveal their preferences forgoodsorservicesthroughmarketproductionandconsumption,andthepricesthatarethereforegiventothesegoods(explicitlyorimplicitly).Wheredirectmarketsforgoodsorservicesexist,thevaluethatpeopleplaceon it is revealeddirectlyusingmarketprices,either forthatorasimilargood (substitute prices). Where an impact causes a change in production, then effect onproduction(orchangeinproductivity)canbeused(NaturalCapitalCoalition2016).

Within these techniques, values can also be revealed by analysing data on the time and costincurredtovisit (say) the facility inquestion (thetravelcostmethod).Alternatively, theycanbebasedonanalysinghowthepriceofanassetchangeswithdifferentattributes, suchashousingprices for access to favoured schools, ecosystems view, or the number of bedrooms (calledhedonicpricing).Thisapproachcanalsousewagedifferentialsbetweensimilarjobstovalue(say)environmentalqualitydifferencesbetweenregions.

Lifesatisfaction(Wellbeingvaluation)

Wellbeingvaluationuses statistical analysesof largequestionnairedatasets to value changes inlife circumstances, by calculating the increase in income which would be necessary for anequivalent increase inwellbeing (Trotter et al. 2014). For example, if the increase inwellbeingassociatedwithimprovedmentalhealthisequivalenttotheincreaseinwellbeingassociatedwitha€2,000increasein income,thenitcanbeinferredthatthevalueof improvedmentalhealth is€2,000peryear.Acombinationofthewellbeingvaluationandstatedpreferenceapproachescanbeused(calledhybridstatedpreference/wellbeingvaluation),wherebyrespondentsareaskedtostatetheamountofcompensationtheywouldbewillingtoacceptforaparticularloss,inordertomaintaintheircurrentlevelofwellbeing.


D.2.2Glossary 21

4 References

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Acknowledgments

TheauthorswouldliketothankVassilisBougioukosandBernardCaseyfortheoriginalversionofthisdeliverable,andthefullSPRINTconsortiumfortheircommentstodevelopthisglossary.

TheSPRINTProjecthasreceivedfundingfromtheEuropeanUnion'sHorizon2020researchand

innovationprogrammeunderGrantAgreementNo649565

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