patient empowerment: for better ... - appg global health · patient empowerment: for better...

A report by the All Party Parliamentary Groups on Global Health; HIV/AIDs; Population, Development and Reproductive Health; Global Tuberculosis; and Patient and Public Involvement in Health and Social Care

Patient empowerment: for better quality, more sustainable health services globallyReport

Patient empowerment: for better quality, more sustainable health services globally

Abbreviations

APPG AllPartyParliamentaryGroup

ART Anti-RetroviralTherapy

DFID DepartmentforInternationalDevelopment

EPP ExpertPatientsProgramme

GP GeneralPractitioner

MI MotivationalInterviewing

MP MemberofParliament

NHS NationalHealthService

PDA PatientDecisionAid

RMC RespectfulMaternityCare

SDM SharedDecisionMaking

TASO TheAIDSSupportOrganisation

UN UnitedNations

WHO WorldHealthOrganization


Patient empowerment: for better quality, more sustainable health services globallyReport

Contents

Preface 2

ExecutiveSummary 3

Whypatientempowermentmatters 9

Internationalexamplestoinspirechange 13

WhattheUKcanlearnfromoverseas 19

Recommendations(PartI) 21

Patientempowerment:Theglobalpicture 23

WhatothersarelearningfromtheUK 25

Recommendations(PartII) 27

References 29

Acknowledgements 31

2


Preface

Thisreporttakesaglobalperspectiveonanissuethatconcernsusall,whereverwelive:whetherhealthcareissomethingthatisdone‘to’usor‘with’us.

Illhealthcanbeprofoundlydisempowering,butweshouldallhavethechancetounderstandwhatiswrong,beinvolvedinmakingdecisionsaboutourtreatment,andtakeresponsibilityformanagingthepartsofourcarethatweareableto.Providingcareinthiswayisn’tjustavitalcomponentofgoodquality,it’salsoessentialtothesustainabilityofhealthsystemsforthefuture.ThisisastruefortheUKasitisforcountrieswheremanypeopleneverseeadoctorduringtheirlifetime.

TheNHShasmaderealprogressovertheyearsinstrengtheningthepatientrole.Thankstohugesocialandtechnologicalchange,reformstoprofessionaleducation,thecommitmentofsuccessivegovernmentsandmanyotherfactors,theroleofthepatientisslowlybecominglesspassive.Still,examplesofpoorcarearenothardtofindandinseveralkeyareaswehavestruggledtoseeanyimprovementforoveradecade.

AssixAllPartyParliamentaryGroupsworkingtogether,wewantedtolookattheglobalpictureonpatientempowerment.Asthisreportoutlines,wefoundthereisagreatdealtheUKcanlearnfromothercountriesabouttransformingsystems,behavioursandmindsetstochangethepatientrole.Atthesametime,therearealsothingsothercountriescanlearnfromtheUK,andthereportsuggestsanumberofpracticalwaystheUKcouldbedoingmoretosupporttheempowermentofpatientsabroad.

Underlyingthewholereportisthesimplemessagethatgivingrenewedemphasisandinvestmenttopatientempowermentateverylevelwillhelpimprovequalityandmakehealthsystemsmoresustainable.

Wewouldliketothankallthosewhocontributedexamples,ideasandevidencetomakethisreviewpossible.Inparticular,wewouldliketothankthereview’sresearchleadJontyRolandandtheteamofcoordinators,advisorsandinternsthatsupportedourAPPGs,whichincludedVanessaHalipi,SusieGrady,LucyFagan,CallumTotten,MetteKjaeby,MatthewOliver,TeddyHla,IsaacGhinai,CatherineRushworthandWilliamBurch.

Meg Hillier MP APPGonGlobalHealth

Lord Crisp APPGonGlobalHealth

Sarah Champion MP AllPartyHealthGroup

Russell Brown MP APPGonHIV/AIDS

Baroness Tonge APPGonPopulation,DevelopmentandReproductiveHealth

Baroness Masham APPGonGlobalTuberculosis

Huw Irranca-Davies MPAPPGonPatientandPublicInvolvementinHealthandSocialCare

33


Executive Summary

Healthcaresystemsaroundtheworldarebecomingincreasinglyinterestedinstrengtheningtheroleofpatientsintheirowncare.IntheUK,patientempowermenthasbeenanobjectiveofsuccessivegovernmentsovermanyyears,withrecentinitiativesincludingnewnetworksoflocalpatientgroupsandsupportforgreaterself-managementofchronicconditions.Forthemostpart,however,theeffectsofthesechangeshavebeendisappointing,withnationalpoliciescontinuingtoemphasisetheneedforfundamentalchange.

Othercountries–includinglowandmiddleincomenations–arealsograpplingwiththeneedtomoveawayfromtraditionalnotionsofthepatientaspassiverecipient.Withpressuresofnon-communicabledisease,ageingandacriticalshortageofhealthworkersglobally,newmodelsofcareareemergingwithgreaterpatientrightsandresponsibilitiesattheirfoundation.

Thisreporthighlightssomeofthelessonsandexamplesfromthisincreasinglyglobalpatientempowermentmovement.Theprimaryfocusisontheroleofindividualsintheirownhealthcare,althoughoverlapwiththeequallyimportantissuesofpublicinvolvementinhealthandempowermentinsocialcarearerecognised.

PartI:GloballessonsAcrossover100overseasexamplesofpatientempowermentsubmittedtothisreview,aclearmessageemerged:thatbygivingpatientstheopportunitytoexpandtheirrole–andequippingthemtodoso-fundamentallynewmodelsofcarearepossible.Thesenewkindsofservicesaren’tjustmoreefficient,theyalsobringhealthcarebacktoitscorevaluesofdignity,safetyandrespect.

“�� One�of�the�striking�opportunities�in�some�of�the�developing�health�systems�is�that�they’re�starting�from�a�different�place�where�they�need�to�use�all�the�assets�available�beyond�the�health�system–�we�haven’t�made�that�shift�yet.”�

Jo Bibby, Director of Strategy, The Health Foundation

Theselectedexamplesarepresentedinfourbroadcategories:self-care,patientsasexperts,shareddecisionsandchoice.WhileitisunlikelythattheUKcan‘cutandpaste’theseapproaches,theyhelpexpandthelimitsofpossibilityandrevealwherepartsoftheNHS’sfuturemaylie.


Summary of overseas examples4

ScalingUpSharedDecision-Making,USA

The Health Decision Sciences Centre at Massachusetts General Hospital has created a streamlined process whereby doctors in primary and secondary care can ‘prescribe’ a patient decision aid through their electronic medical record. The patient can then access the tool outside of the consultation to facilitate better shared decision making.

RespectfulMaternityCare,NepalandNigeria

A national standard across Nigeria and Nepal, this approach centres on using real-life experiences of mothers to challenge professional mindsets and create an impetus for frontline teams to improve services. One NHS trust has already successfully adopted it following failures in care.

CareCompanionproject,India

India’s largest cardiac hospital is training patients’ carers through a programme of teaching, certification and hands-on work on the ward during the patient’s stay at the hospital. This gives carers the skills to better look after their family member when back at home.

ParticipatoryWomen’sGroups,Bangladesh,India,MalawiandNepal

Participatory learning and action groups empower local women to identify health problems around childbirth, then find and implement their own solutions. Results across over 100,000 births showed dramatic reductions in maternal and neonatal mortality.

5


Summary of overseas examples 5

UK examples of these principles in practice in the NHS are also given. On self-care, the work of NHS Fife’s ‘One size fits one’ approach is highlighted, where personal care for older people is provided by a network of ‘micro-providers’ (local people or even neighbours) to reduce hospital stays and offer more appropriate, caring services. On shared decision making, the use of direct payments in social care and personal health budgets in the NHS is outlined,

through which patients are being given control of the money that is used to fund their care. On choice, England’s experience of eliminating waiting times for treatment over six months is described, and the effect that transparency and provider choice had on achieving this. On patients as experts, the work of the University of Central Lancashire to systematically involve patients and carers in medical education is summarized, as well as the work of the Expert Patients Programme.

JustAskCampaign,Denmark

Denmark created a programme to drive population-wide change in the relationship of patients and professionals. This involved mass distribution of tools supporting and prompting patients to ask more questions and overcome ‘white coat silence’.

Patientheldrecords,DenmarkandMalawi

Using e-records or paper, some countries are turning the relationship of patients to their data on its head, giving partial or complete ownership of medical records to the individual.

TASO,Uganda

TASO serves around 100,000 Ugandans with HIV per year through a network of 11 patient-run HIV/AIDS service centres around the country. Their ‘expert clients’ manage drug distribution, conduct home visits and educate other patients on better managing their condition and improving livelihoods.

PatientFirstAmbassadors,Australia

Designed to create a step-change in patient understanding of their rights, responsibilities and ability to make informed choices, volunteer patients were recruited and trained to discuss these aspects of care with their peers on outpatient wards.

6


Overseasexamplespointsomeoftheway,butthebiggestchallengefortheNHSistogobeyondisolatedinitiativestoawhole-systemeffort.GovernmenthasbeenrighttosetNHSEnglandthechallengeofbecoming“dramaticallybetter”atinvolvingpatientsandtheircarers.12Therehasbeenmuchgoodworktoachievethis,butmuchmoreisstillneededif“professionalsaretocomeofftheirpedestals,andpatientsaretogetupofftheirknees”(RobertJohnstone,InternationalAllianceofPatients’Organizations).

“�� On�patient�choice,�I�think�the�UK�is�ahead�of�many�other�countries.�On�patient�representation,�we’re�in�a�good�position�too.�Where�we�lag�behind�is�the�cultural�change�needed�in�frontline�care,�which�is�a�pity�because�that’s�the�most�important�part”�

Angela Coulter, Director of Global Initiatives, Informed Medical Decisions Foundation

Some of the key lessons from the overseas examples, which should inform this bigger whole-system effort, include:

z Toseepatientsandthecommunityasassets,ratherthanjustsourcesofneed

z Toadaptapproachestolocalcontexts,andexperiment

z Tochangepatientandprofessionalattitudesbyworkingfromthetop-downandbottom-up

z Tofocusonequippingpatientswithnewskillsandtools,ratherthanjust‘informing’them

Drawing on these lessons, four actions are suggested for policy and practice to step up to the scale of Government’s “dramatically better” ambition for patient empowerment:

1 Make empowering individuals in their own care a top political priority – and align incentives for a whole-system effort across the health and care sectors

2 Revive the revolution in decision support tools as part of a systematic drive on shared decision making led by government, the NHS and professional bodies

3 Give patients co-ownership of their records, not just access

4 Encourage patients to ask more questions about their care, through a national campaign targeted at people with long-term conditions and greater access to structured education on self-management.

“�� The�goal�is�to�change�the�clinical�paradigm�from�“what’s�the�matter”�to�“what�matters�to�you”�

Susan Edgman-Levitan, Executive Director John D Stoeckle Centre for Primary Care Innovation, Massachusetts General Hospital

77


PartII:GloballeadershipThoughthereisagreatdealtheUKcanlearnfromothers,atagloballevelitisclearthatmuch,muchmoreneedstobedoneinothercountriestoo.Rigidandhierarchicalsystemsofcarearestillthenormacrossmostoftheworld,drivenbypooraccess,lackofhealthliteracyandpowerfulelites.

Historically,theUKhasplayedanimportantroleinadvancingthepatientandpublicinvolvementagendainternationally.PartIIofthisreportoutlinesanumberofsuccessfulinitiativesandfeaturesoftheBritishhealthsystemthatareguidingothercountries’approaches.Theseinclude:

z Patientfocusconsistentlyenshrinedacrossnationalpolicies

z Transparencyofperformanceanddecisionmakingatlocalandnationallevels

z Patientinvolvementatallstagesofhealthresearch

z Aninfrastructuretosupportpatientleadership

z Anappetiteforexperimentation

“� �We�believe�that�the�UK�can�play�a�very�strong�role�in�advocating�for�other�countries�that�are�developing�their�health�systems�from�the�ground�up�to�make�sure�that�patient�empowerment�is�built�in�from�the�beginning�rather�than�bolted�on�towards�the�end”�

Linda Craig, Operations Director, International Alliance of Patients’ Organizations

Government should aspire to continue the leadership provided by the UK in the past by offering British expertise to countries that are still developing this agenda, as well as advocacy through intergovernmental bodies. Three actions would make a major difference to the UK’s contribution globally:

1 Bring together the Department for International Development’s existing work strengthening health systems with the expertise of British institutions working to empower patients

2 Lead efforts to fill critical knowledge gaps about patient empowerment, most importantly its value for money

3 Advocate for intergovernmental bodies to embed patient empowerment across their health work, in particular the World Health Organization and United Nations

Patientempowermentisnotjustanimperativeforindustrialisednations,norisitprimarilyforayoung,articulateminority.Althoughforsomepeopleempowermentwillstillmeanwantingprofessionalstotakedecisionsforthem,itisthosewiththeleastpowernowthathavethemosttogain.Thisappliesequallytolow,middleandhighincomecountries,andacrossphysical,mentalandsocialneeds.

“�� The�power�of�a�testimony�from�a�family�member�or�patient�to�galvanise�change�is�absolutely�huge.�Statistics�change�the�head,�but�the�patient�sharing�their�story�changes�the�heart.�A�lifetime�of�practice�can�be�changed�by�that�sort�of�exposure”�

Liam Donaldson, WHO Envoy for Patient Safety

8


WhatthisreviewinvolvedThisreviewwasestablishedbysixAllPartyParliamentaryGroups(APPGs)toconsiderwhattheUKcouldlearnfromabroadaboutpatientempowermentandwhatwecouldbedoing,inturn,tosupportothercountriestoempowerpatientsintheirhealthsystems.

Itcomprisedtwooralevidencesessions,heldintheHousesofParliamentinJanuary2014tohearfromleadingfiguresfromtheNHS,civilsociety,academiaandinternationalgoverningbodies.Acallforexamples,evidenceandcasestudiesfromaroundtheworldwaslaunched,whichreceived40submissions–includingover100casestudiesofinnovativeprogrammes.Aliteraturereviewwasalsoconducted,focussingonsystematicreviewsofevidencerelatingtopatientempowerment(andavarietyofrelatedterms).

What is ‘patient empowerment’?

Theconceptandterminologyof‘patientempowerment’arecomplexandcontested.Arepatients‘empowered’,‘engaged’,‘involved’,or‘activated’?Should‘patient’stillbeusedorreplacedwith‘citizen’,‘serviceuser’orsimply‘person’?Howshouldcarers/care-givers/friendsandfamilybeincluded?

‘Patientempowerment’isusedinthisreportbecauseitissuccinctandfoundtobemostcomprehensibletoaglobalaudience.Ithasitsshortcomings–notablythatitdoesnotexplicitlyrecognisecarersandforsome‘patient’isaloadedterm–butnolanguagehasyetemergedthatisatonceconcise,value-freeandsensibletothenon-specialist.

Semanticsaside,theemphasisofthisreviewisprimarilyontheroleofpeoplewhoreceivehealthorcareservices(andtheircarersandfamilies).Thisincludespeoplewithphysicalandmentalhealthneeds.Lessattentionisgiventotheinvolvementofthewiderpublic(citizens)inlocalplanningandprioritysetting,vitalthoughthisistotheneedtogethealthacrossallpoliciesandmoveawayfromsocietiesthat“activelymarketunhealthylifestyles”.9

Inpracticethismeansthereviewfocussedoninterventionsthatresultedinpatientsortheircarers:

z Betterunderstandingtheircondition

z Participatinginmakingdecisionsabouttheircare

z Beingsupportedtobetterself-managetheirhealthandtreatment

z Expressingtheirviewsandpreferencesinawaythatmakesameaningfuldifference

z Feelingconfidenttoaskquestionsandchallengeprofessionalsandorganisations

z Havingthechancetojoinnetworksorgroupsofotherpatientsinsimilarcircumstances.

Aparallel‘empowerment’movementalsoexistsinthesocialcaresector.Whilesocialcarewasnotthemainfocusofthisreview,thereisclearlyasignificantoverlapwithhealthneedsandservices.Thussomelessonshavebeendrawnfromexamplesthatcouldbeclassedassocialcare,andsomeofthereview’srecommendationswillhaverelevancetobothsectors.

99


Why patient empowerment matters

Involving�patients�in�their�own�care�improves�quality�and�is�vital�to�the�sustainability�of�health�systems�around�the�world.�Although�a�complex�concept�to�define�strictly,�patient�empowerment�is�now�widely�recognised�as�a�fundamental�pillar�of�healthcare�for�the�21st�century.�The�challenge�is�agreeing�how�to�put�it�into�practice.

Engagingpeopleintheirowncareisanimportantgoalinitself,andakeycomponentofhighqualityhealthservices.3RecentexamplesfromanumberofUKhospitalshaveprovidedshockingremindersoftheneglectandilltreatmentthatcanresultwhenpatients’perspectivesarenotheard.4YetsuchexamplesarefarfromauniquelyBritishproblem,withhealthsystemsaroundtheworldseekingtocreatemore‘person-centred’servicesinresponsetoalackofsafety,dignityandautonomyfortheirpatients.5678

Patientempowermentisalsoseenasasolutiontomanyofthemostpressingproblemsfacingmodernhealthcare.Theseincludetherisingburdenofchronicdiseases;ageingandendoflifecare;theneedtoencouragehealthierlifestyles;andthechallengeofcoordinatingcareforpeoplewithmultiplecomplexconditions.Foralloftheseissues,greaterself-managementandindividualresponsibilityareheldasimportantwaysofdesigninghealthservicesabletosustainqualityundergrowingpressures.

“� �Empowered�patients�aren’t�a�nice�to�have,�they’re�fundamental�to�the�survival�of�the�NHS”�

Luke O’Shea, Head of Patient Participation, NHS England

10


Reviewsoftheevidenceonpatientempowermentshowthatthedegreetowhichpatientsareinvolvedintheircarehasasignificantimpactonthequalityoftheirtreatment,andcanalsomakeamajordifferencetothecost.10Summaryanalysesofstudiesoninterventionstobetterinformandinvolvepatientsintheircareshowthat,onthewhole,theyleadtoimprovedexperience,lowerdependenceonhealthservices,betteradherencetotreatmentand,insomecases,measureableimprovementsinhealthoutcomes.1112

Table 1. Summarised findings of systematic reviews on effectiveness of strategies to inform, educate and involve patients in their treatment 13

Total number of reviews found

Effects on patients’ knowledge

Effects on patients’ experience

Effects on use of health services

Effects on health behaviour and health status

Improving health literacy

25

Reported in 13 reviews: 10 positive, 2 mixed, 1 negative




Improving clinical decision making

22

Reported in 10 reviews: 8 positive, 2 mixed




Improving self care and self management of chronic disease

67Reported in 19 reviews: all positive




Improving patient safety

18Reported in 4 reviews: all positive

Reported in 1 review: positive

Reported in 3 reviews: 2 positive, 1 negative


ReproducedfromCoulterA,EllinsJ(2007)Effectivenessofstrategiesforinforming,educating,andinvolvingpatients.BritishMedicalJournal335:24–7,withpermissionfromBMJPublishingGroupLtd

1111


Table 2. Benefits of patient empowerment – some examples

Healthier behaviours

Motivationalinterviewing(MI)isatechniquetofacilitatebehaviourchangebydrawingoutapatient’sownmotivationsandgoals,ratherthanimposingthoseofthehealthprofessional.Byplacinggreaterimportanceonthepatient’sautonomy,thesetechniquesoutperformtraditionaladvice-givingintermsofimprovinghealthbehavioursandadherencetorecommendations.ThiseffectpersistsevenwhenMIisusedinbriefconsultations.1415Itisalsoeasilyadaptedforusebynon-clinicians,suchaslocalpatientandpeersupportgroups.

Greater satisfaction

PersonalHealthBudgetstakecareplanningastepfurther,givingpeoplewithlong-termconditionscontrolofthemoneyusedtofundtheircare.Athree-yearpilotofover2000patientsacrossEnglandfoundtheyimprovedqualityoflifeandpsychologicalwellbeingforpatientsandcarers,withthebiggestimprovementsforthosewiththemostcomplexproblems.Budgetholdersalsospentlesstimeinhospital.16

Better decisions

PatientDecisionAids(PDAs)aretoolstohelppeoplemakeimportantdecisionsabouttheircare–particularlywhenthereismorethanoneoption.Patientsareguidedinbalancinginformationaboutthebenefitsandrisksagainsttheirpersonalpreferences,withtheaimofimprovingshareddecisionmakingwiththeirclinician.StudiesintotheeffectsofPDAsshowareductioninelectiveproceduresaveraging21percent,whiledeliveringanimprovedexperiencewithnoadverseeffectsonhealthoutcomes.17

Sustainable services

TheNHSExpertPatientProgramme(EPP)aimstoequippeoplewithlong-termconditionswiththeinformationandskillstobetterself-managetheirhealth.EPPgenerallyconsistsofaseriesofsixweeklysessions,facilitatedbyatutorandalongsidepatientswiththesamecondition.EPPisnowavailableforoveradozenchronicconditions,withparticipantsreportinggreaterconfidenceandselfcontrol,andreduceddependenceonhealthcare.18

Inshort,well-informed,supportedandempoweredpatientsservetheinterestsofindividualsandthehealthsystem.

TheUK,alongwiththerestoftheworld,facesanumberofcommonbarrierstoempoweringpatients.First,itisadifficultconcepttoquantifyandcompare,meaningitishardtosayclearlywhoisdoingitbetterthanothersandhowthishasbeenachieved.1920Second,researchevidenceonpatientempowerment,whilemuchstrengthenedoverrecentyears,stillcontainsimportantgaps–mostimportantlywhethertheinterventionsthatworkoffervalueformoneywhendoneonalargescale.21Thirdarepracticalbarrierssuchasthelimitedtimethathealthprofessionalshavetospendoneachpatientandaconcernthatempoweredpatientswillbemoredemanding,ratherthanmoreindependent.22

12


Perhapsthemostpowerfulbarrierofall,however,isthatmanyprovidersgenuinelybelievethisissomethingtheyalreadydo.Astrongconsensusontheimportanceofpatientempowermenthasnottranslatedintoamovementforchange.ThisisdespitethefactthatonlyhalfofEnglishpatientsinhospitalsaytheyareinvolvedindecisionsabouttheircareasmuchastheywouldlike–afigurethathasshownnoimprovementoverthelastdecade.23Thishighlightstheimportanceofholistic,whole-systemchangebuiltonashiftinprofessionalattitudesandbehaviours.24Withoutthis,thereisadangerthatpatientswillbecomeempoweredonlytobediscouragedwhentheyencounterservicesthatdon’tembracethisnewrelationship.2526

“�� There�are�very�few�people�who�are�arguing�against�the�idea�of�patient�empowerment.�It’s�the�practicalities�of�making�it�a�reality�where�there’s�often�resistance.”�


1313


International examples to inspire change

Over�100�examples�of�patient�empowerment�initiatives�from�high,�middle�and�low�income�countries�were�submitted�to�this�review.�A�theme�running�through�all�of�these�was�patients�and�their�carers�taking�on�roles�well�beyond�that�of�passive�recipients�of�care.�The�following�eight�best�represented�these�expanded�roles,�showcasing�expanded�ways�of�encouraging�self-care,�patient�expertise,�shared�decisions�and�informed�choices.�Though�it�is�unlikely�the�NHS�can�directly�‘cut�and�paste’�solutions�from�India,�Uganda�and�the�United�States,�these�examples�help�to�expand�the�limits�of�possibility.�For�each�category,�an�example�of�how�these�principles�are�already�at�work�in�the�UK�is�given.

Self-careItiswidelyrecognisedthatthevastmajorityofcareisdeliveredbypeoplethemselves,notprofessionals.Self-managementsupportprogrammesforchronicconditionsarebecomingmorecommonacrosstheworld.Thefollowingtwoexamplesextendtheseprinciplesevenfurther–puttingpatientsrightatthecoreofdeliveringcareforthemselvesandothers.

TASO - The AIDS Support Organisation (Uganda)InHIVcare,theuseof‘layhealthworkers’hasbeenamajorfactorinthescaling-upofanti-retroviraltherapy(ART)tolargepopulationsacrossAfrica.TASOservesaround100,000UgandanswithHIVperyearthroughanetworkof11patient-runHIV/AIDSservicecentresaroundthecountry.Eachcentreisstaffedbyupto50‘expertclients’,managedbyaprofessionalcoordinator.Inadditiontodrugdistribution,theclientsconducthomevisitsinwhichtheyeducateotherpatientsonthedosanddon’tsofbeingonART,makesuretheyarestoringdrugscorrectly,haveappropriatehygieneandareadheringtotreatment.Theycanalsoconnectthemto,andfollowupfrom,livelihoodtrainingprogrammesoperatedbyTASO.Thoughbornofnecessity,TASOfindsfellowpatientsarebetterthanprofessionalsatachievingbehaviourchangeamongtheirpeers.

Formoreinformation,visitwww.tasouganda.org

Participatory Learning and Action Groups (Bangladesh, India, Malawi and Nepal)Around270,000womenworldwidedieeveryyearfromcomplicationsofpregnancyandchildbirth,andnearlythreemillioninfantsdonotsurvivethefirstmonthoflife.Participatorywomen’sgroupsareacommunitybasedapproachtotacklingthisproblem.Thegroupsempowerlocalwomentoidentifyandprioritisehealthproblemsaroundchildbirth,thenfindandimplementlocallyappropriatestrategiestoovercomethese.Self-directedandusingparticipatorymethodssuchasvoting,role-playandstorytelling,thegroupsboostwomen’sconfidencetotalkabouttheirproblemsandeffectchangeintheirownandeachother’sbehaviour.

14


Ameta-analysisofsevenrandomisedcontrolledtrialsoftheapproachinfourcountries(coveringover100,000births)hasshowndramaticreductionsinmaternalandneonatalmortality,down37and23percentrespectively.Asmall-scaletrialisnowplannedtoadaptthisapproachtotheUK–focusingonfamiliesindeprivedurbanareas.

FormoreinformationseeProstetal.(2013)Women’s�groups�practicing�participatory�learning�and�action�to�improve�maternal�and�newborn�health�in�low-resource�settings:�a�systematic�review�and�meta-analysis.27

How this is working in the UKTheUKhasavibrantvoluntarysector,butitcanoftenbepoorlyintegratedwithformalservices.OneareathatistryingtointegratecommunityassetsintothecorehealthsystemisNHSFife.Their‘Onesizefitsone’approachturnscommunityresourcesintomicro-enterprisestobettercareforolderpeopleandreducehospitaladmissions.Centraltotheprojectissupportingstafftohavepersonaloutcomes-basedconversationswithpeopleandhelpingtobuildtheindividual’sandcommunity’sself-relianceandresilience.Forexample,ifanolderpersonbreakstheirwristandisunabletolookafterthemselves,insteadofbeingadmittedtohospitalmicro-providersarerespondingbyprovidingmealsandpersonalcaretokeepthepersonintheirhome.Inanothercase,whatmatteredtoanelderlywomanlivingalonewascupsofteaandchatsandbeingabletovisitthelocalshops.Puttingthisinplaceforthisindividualledtoearlydischargefromthedayhospitalshewasattendingandledtoacostsavings.Thismeanscarespecifictothepatient’sneeds,deliveredtothembylocalpeopletheymayalreadyknow,withfewerdelaysindischargesorlengthyhospitalstays.

Formoreinformation,seethefullcasestudyonNHSFifeontheHealthFoundation’swebsite.28

ExpertsDescribingpatientsas‘experts’iscontroversial,butwhocanunderstandtheexperienceofanillnessbetterthanthepersonwithit?Thefollowingtwoexamplesshowtwoaspectsofthisconceptthathavebeengivenlessattention–trainingupfamilymemberstobettercareforpatientsathome,andusingtheuniquelivedexperiencesofserviceuserstodirectlychallengehowcareisdelivered.

Care Companion programme (Narayana Hrudayalaya Hospital, India)TheCareCompanionprogrammeaimstoempowerthecaregiversofat-riskpatientswiththeskillstheyneedtotakebettercareoftheirlovedonesbackathome.Onadmissiontothehospital–theworld’slargestcardiaccentre-thepatient’smaincarerisidentifiedandofferedthechancetoenrollintheprogramme.Then,whilethepatientgoesthroughthepre-operativestagesandsurgery,thecaregiverundergoesclassroomtrainingsessionsviainteractivevideos.Thisisthenfollowedupbyhands-on,in-persontraininginthepost-operativewardwhenthepatientisinrecovery.Thecaregiveristhencertified–followinganexam–andsupervisedworkingonthewarduntilthepatientisdischarged.Theprogrammeisnowoperatingacrosstwohospitalsinthegroup,withplanstorolloutacrossall27inthechaininthecomingmonths.Thehospital’sleaderssaythat100percentoftraineesreporttheprogrammeas‘veryuseful’,thattheyintegrateverywellintotheday-to-dayrunningofthehospitalandareresultinginarepositioningoffamilymembersasanintegralpartofpatientcare(whilereducingtheworkloadforhospitalstaff ).

1515


Respectful Maternity Care (Nigeria, Kenya, Bangladesh, Yemen and Nepal)RespectfulMaternityCare(RMC)isapackageofmeasuresdesignedbyaninternational‘communityofconcern’convenedbytheglobaladvocacynetworkWhiteRibbonAlliancetoinspiremidwife-ledchangeinthetreatmentofwomengivingbirth.Theapproachcentresonusingtheperspectivesandreal-lifeexperiencesofmotherstochallengeprofessionalmindsetsandcreateanimpetusforfrontlineteamstoimprovetheircare.Todate,midwiveshavebeentheagentsofchangeintheprocess.Keycomponentsoftheinterventioninclude:

z Presentingstaffwithlocalpatientstoriesofpoorcareandneglect

z Agreeingandpromotingaclearcharterofrightsthatallmothersandmidwivesshouldbeawareofandexpectduringtheircare

z Settinglocalproblemsagainsttheglobalcontextofpoorcareandabuseofchild-bearingwomen

z Devisingandimplementingmidwife-ledchangesinpractice

RMCisnowenroutetobeingadoptedasthenationalstandardofpracticeforNigeriaandNepal.Althoughitwasdesignedtoreducehighratesofmaternalmortalityinlowandmiddleincomecountries,recentlyithasbeenattractinginterestwithintheNHS.OneEnglishhospitaltrustsuccessfullyadoptedit,alongsideapackageofothermeasures,followinganinvestigationintopoormaternitycare.TheRoyalCollegeofMidwives,aswellasanumberofLondonhospitals,arenowconductingworktoassessRCMspotentialforwiderimplementationacrosstheUK.

Formoreinformation,seeA�Guide�for�Advocating�for�Respectful�Maternity�Care.

How this is working in the UKAlthoughnotyetnormalisedacrossmedicaleducation,anumberofUKmedicalschoolshaveintegratedpatientperspectivesandexpertiseintothecoreofhealthprofessionals’training.Comensus(CommunityEngagementandServiceUserSupport)isaserviceuserandcarer-ledteamthatworktosystematicallyinvolvepatientsacrosstheUniversityofCentralLancaster’sFacultyofHealth.Courseleadersworktodeploytheteam’smembersacrosstheircurricula,buttherearealsoentirelyuser-designedandledmodules.

FormoreinformationseetheHealthFoundation’sreportCan�patients�be�teachers?29

Anotherdimensionofthepatientas‘expert’involvesgivingpeopletheknowledgeandskillstobeincontroloftheirowncondition.ThisisthefocusoftheExpertPatientProgramme,whichhasbeenoperatingandexpandingformorethan10yearsacrossEnglandandWales.SeeTable2(page11)formoredetails.

ShareddecisionsShareddecisionmakingisatthecoreofpatientempowerment.Itfocussesongoodcommunicationandensuringtreatmentsarebasedonthepatient’spreferencesandbestavailableevidence.Thefollowingtwocasestudieshavebeenreproducedfrom‘PartneringwithPatients,Families,andCommunitiesforHealth:AGlobalImperative’,areportpublishedfortheWorldInnovationSummitforHealth(WISH)2013,aninitiativeofQatarFoundation(availableatwww.wish-qatar.org/reports/2013-reports).30

16


Just Ask Campaign (Denmark)TheDanishSocietyforPatientSafety,inpartnershipwithTrygFonden,hascreatedavarietyofinitiativesaimedatengagingpatientsandtheirfamilies.ThePatientHandbook,forexample,isawrittenguidetohospitalcarethatisdesignedtofacilitatepatientandfamilyinvolvement.Anestimated10percentofallhouseholdsinDenmarkhaveacopyofthehandbook.TheSocietyhasalsotransformedthehandbookintoquestionpromptsforpatientstoasktheirproviders( JustAsk)online,oncellphonesandinapaperformat.Thesiteallowspatientstochoosespecificquestions,addtheirown,andmakesuggestionsforotherstouse,andthenprintoutthelistoftheirquestions.Astudyhasshownthat86percentofthecitizensthathavereceivedandusedJustAskintheircontactwithhealthcareprovidershadanimproveddialogueandaskedmorequestions.

TheDanishSocietyforPatientSafetyalsousesinnovativecommunityoutreachstrategiestoinitiateconversationswithpeopleabouthowtobemoreeffectivepartnersintheirhealthcare.Distributionchannelsforthesematerialsincludehealthcareproviders,patientorganisations,hairdressers,media,unions,andbusinesses.

Formoreinformation,visitwww.just-ask.dkandseePatientHandbook:A�Patient’s�Guide�to�a�Safer�Hospital�Stay.31

Scaling Up Shared Decision-Making (USA)TheHealthDecisionSciencesCentreatMassachusettsGeneralHospitalisseekingtospeedtheadoptionofpatientdecisionaids–evidencebasedtoolsdesignedtoinformpatientsabouttherisksandbenefitsofvarioustreatmentoptionsandhelpthemcometoa‘shareddecision’withtheirmedicalteam.Astreamlinedprocesshasbeendevelopedwherebydoctorsinprimaryandsecondarycaregethands-ontrainingwith35decisionaidsforcommonconditions,whichtheycanaccessthroughthepatient’selectronicmedicalrecord.Theclinicianisthenableto‘prescribe’anappropriateinformationtoolforthepatientbeforeanyimportantdecision.Thisisthennotedonthepatient’smedicalrecordforfuturefollow-up.Atrainingprogrammeisdeliveredtoclinicianstoteachthemaboutthebenefitsofthedecisionaidsandhowtousethem,inordertotryandnormalisetheiruse.

TheCentreworkswith15primarycarepractices(covering200,000people)and120hospitaldoctorsperyear.16,000ofthe‘prescriptions’havebeenorderedtodate,withinitialresultsfromanevaluationshowingstrongtake-upandincreasedpatientsatisfaction.

Formoreinformation,visitwww.massgeneral.org/decisionsciences

How this is working in the UKPersonalbudgetsanddirectpaymentshavebeenusedinsocialcareformorethan10years.Theyaimtoincreaseserviceuser’schoicebygivingthemcontrolofmoneythatwouldbeusedtofundtheircareandallowingthemtodecidehowthisshouldbespenttomeettheirneeds.Over40percentofsocialcareserviceusersinEnglandnowusepersonalbudgetsordirectpayments.TheconceptisbeingexpandedtotheNHS,startingwithNHSContinuingHealthcarewherefromOctober2014eligiblepeoplewillhavea‘righttohaveapersonalhealthbudget’.

Formoreinformation,visitwww.personalhealthbudgets.england.nhs.uk

1717


ChoiceInadditiontotreatments,peopleareroutinelyexercisingotherchoicesabouthealthandhealthcare–whethertheychoosetovisittheemergencydepartment,GPorpharmacy,forexample.Orwhatlifestyleorhealthproductstobuy.VariousattemptshavebeenmadeintheUKtointroducenewwaysforpeopletoaccesshealthcare,butthekeyishavingusefulinformationandknowledgetoguidehealthchoices.Twooverseasexamplesstruckupparticulardebate.

Patient-held health records (Denmark and Malawi)WhiletheUKworkstowardsatargetofpatientaccesstotheirmedicalrecordsby2015,anumberofcountrieshavetakenamoreradicalstep–allowingpatientstointeractorevenowntheirrecords.

Denmarkoperatesoneofthemostwidelyusedandsophisticatedelectronichealthrecordsystemsintheworld.Since2003,anationaleHealthportalhasgivenallcitizensaccessandpartialeditingrightstoacentralsharedindividualrecord.Userscanfindinformationontheirprevioustreatmentsanddiagnoses,bookappointmentswithGPs,renewprescriptions,surveylocalproviderwaitingtimesandqualityratingsandconnecttopatients/carerslikethemthrough‘chat’facilities.Citizenscurrentlyvisittheirhealthportalanaverageofseventimesperyear,andthedisparityintheageprofileofusersofthesystemseeninitiallyhasbeeneliminated.

Malawi’s‘frugal’equivalentofthismodelshowsthathigh-techsolutionsarenottheonlywayofgivingpatientsaccesstotheirhealthrecords.AllMalawicitizensareissuedwithaphysical‘healthpassport’whichtheykeepthemselvesandtaketoeveryhospitalvisit.Thepassportsareanintegratedrecordofthepatient’shealthconditions,outpatientappointments,asummaryoftheirin-patientconsultationsandimmunizationrecords.Therecordstravelwiththepatient,ratherthanbeingheldbytheprovider,andvisitsbeginwithpatientandclinicianreviewinghistoryandprogresstogether.Healthpassportshelppatientstobemoreinvolvedintheircareandmeanaprovidercanseetheirrecordswherevertheyseekcare.AlthoughMalawiisnowbeginningtointroduceanelectronicsystemofrecords,theystillplanonrunningthisalongsidethehealthpassportsystem,sothatrecordswillstillbeheldbythepatientaswellastheprovider.

Patient first ambassadors (Australia)WesternAustralia’sPatientFirstAmbassadorswereintroducedtocombattheseeminglyinsurmountabletaskofchanginghowpatientssawtheirroleandcreateastepchangeinpeople’shealthliteracy.Volunteerpatientswererecruitedandtrainedtoengagewithpatientsinhospitaloutpatientdepartments–discussinginformedconsent,makingdecisions,privacyandmanagingmedicationswiththem.TheywereequippedwithaPatientFirstHandbooktodistributetopatients,whichalsocontainedinformationonrights,shareddecisionmaking,understandingtherisksoftreatment,stayingsafeinhospitalandmedicationsafety.

Formoreinformation,seetheAustralianCommissiononSafetyandQualityofHealthcare’sreportPatient-centred�care:�Improving�quality�and�safety�through�partnerships�with�patients�and�consumers.3233

18


How this is working in the UKAccesstohealthcareisacriticalcomponentofpatientempowerment,withchoicebetweenprovidersanimportantcomponentofthis.England’sexperienceofincreasingchoiceofproviderhasbeencomplex.Oneofthemostimportantlessonslearnedhasbeenthat,whilefewpatientsmaytakeadvantageofhavingthischoice,transparencyofperformancedataandthethreatoflosingpatientstootherscanstillhaveasignificanteffectonproviderbehaviour.Thiswasthecaseintherapidfallinpeoplewaitingmorethansixmonthsfortreatmentthattookplacebetween2002–2005(from250,000patientsperyear,tozero).Thereductionwasmotivatedbytwoinitiatives.Firstly,apolicywherebypatientswaitingmorethansixmonthscouldopttotransfertoanotherhospitalforimmediatetreatment.SecondwastheintroductionofthefirstIndependentSectorTreatmentCentres.34

Morerecently,UKprovidersanddevelopershavebeenamongtheleadersinexpandingaccesstomentalhealthservicesthroughcomputerisedself-helpandpeer-support.Serviceslikebeatingtheblues.co.uk,bigwhitewall.comandfearfighter.comarehelpingtoeducatepeopleaboutmentalhealthandexpandaccesstogroup,talkingandcognitivebehaviouraltherapiesatextremelylowcost.

1919


What the UK can learn from overseas

The�examples�submitted�to�this�review�share�a�number�of�striking�features�that�warrant�further�consideration�within�the�NHS.�These�include�seeing�patients�and�the�community�as�assets�rather�than�a�source�of�need;�the�power�of�collective�action�by�groups�of�patients;�the�importance�of�local�context�and�adaptation;�the�need�for�every�level�of�the�system�to�act;�and�focussing�on�educating�and�engaging�–�rather�than�just�informing�–�patients.

Thefirstlessonfromthesubmittedexamplesisthebenefitsofharnessingresourcesbeyondtheformalcaresystem.Thismeansseeingpatientsandtheircarersnotonlyasasourceofneedbutalsoassetsthatcanbeusedfordirectcareofthemselvesandothers;providersofinformationandmotivationfortheircommunity;andchange-makerswithinhealthservicesthemselves.

IntheUKsomeoftheseideashavebecomefamiliarthroughtheCoproductionmovementaswellastheDepartmentofHealth’sworkonself-care.353637Thesehaveshownhowpatientsandtheircarersalreadyprovidethevastmajorityofcare,withhealthprofessionalsmakingupjustasmallfractionofthe‘laboursupply’.Someoftheoverseasexamplesshowtheseprinciplestakentothenextlevel,withscaled-upmodelsofcarewherepatientsmakeupacentralcomponentofserviceprovision,improvementandinnovation.Lowandmiddleincomecountriesseemtobeleadingthewaywiththis.

“� �Where�you�don’t�have�a�well-resourced�medical�infrastructure�you�have�to�be�much�more�creative�about�how�you�mobilise�the�resources�of�your�wider�population�to�promote�health�and�wellbeing.�We�have�much�to�learn�from�other�countries�in�this�respect,�not�only�in�making�limited�resources�go�further�but�in�the�huge�benefits�of�embracing�‘people�power’�alongside�formal�healthcare”�

Jeremy Taylor, Chief Executive, National Voices

Arelatedsecondlessonisthepowerofgroups.Whetherhelpingpeerswithinthegroup(aswiththeparticipatorywomen’sgroups)orharnessingcollectiveactiontohelpothers(suchasTASOUganda),patientsareachievingthingstogetherthatformalservicescannot.Oneoftheparticularstrengthsofgroupsappearstobethecredibilitythatlivedexperienceconfers,allowingpatientstoovercomesomeoftheresistancethathealthprofessionalsoftenencounter.

TheUKhasitsownexperienceofthisthroughthesuccessofgroupssuchasAlcoholicsAnonymousandWeightWatchers,bothofwhichhavefoundthatdifficultbehaviourchangescanbemoreeasilyachievedusingpeersaswellas,orinsteadof,professionals.AstheUKcontinuestostrugglewithproblemssuchaspoormentalhealth,unhealthylifestyles,lonelinessandalackofgoodcareforolderpeople,howelsemightweadaptthesemodels,inspiredbywhathasbeenpossibleathomeandabroad?

20


Lessonthreeisthatlocalcontextisparamount.Afeatureofmanyoftheexamples–frombothhighandlowincomecountries–isthattheydonothavetheiroriginsinadetailedsurveyoftheliteraturefollowedbyimplementationofthemosteffective,evidence-basedsolution.Rather,theirexperienceismorecommonlyoneoftrialanderror,adaptationandimprovisation,oftenenhancedbytheinclusionofpatientsandfamiliesintothedesignprocess.Patientengagementinterventionsaredifficulttoevaluatebecauseofthevariabilityofpatientcharacteristicsthatcancontributetosuccessorfailureandthedifficultyofrandomizingparticipation.Thislimitsthetransferabilityofevidencebutadaptionofcommonattributesofsuccesscanbeshared.Itisalsoimportanttorememberthatwhatgoodevidencedoesexist–whilemostlypositive–isstillmixed.Empoweringpatientswillnotalwaysimprovehealthoutcomes,nordecreaseservicecost.Inthesecircumstanceslocalservicesandpatientsarerighttoexperimentandtoadaptwhatothershavedone.

Afourthlessonisthateverylevelofthehealthsystemhassomethingtheycancontributetoseepatientsempoweredonabiggerscale.Twothemesthatcommonlyappearedinsuccessfullarge-scaleinitiativeswereafocusonmotivatingindividualprofessionalsandpatientsthroughtheirownexperience,andthevitalrolethatgovernmentpolicyandprofessionalbodiescanhaveindrivingchange.Thishighlightsthechallengeofneedingbottom-upandtop-downaction.

“�� Whatever�we�do,�it�needs�to�be�a�holistic�approach�–�equipping�individuals�to�manage�their�care,�as�well�as�supporting�professionals�to�have�the�skills�needed�to�play�a�more�enabling�role�rather�than�‘diagnose�and�treat’”�

Jo Bibby, Director of Strategy, The Health Foundation

Finally,butperhapsmostimportantofall,isthefocussomanyofthesuccessfulexampleshaveofputtingskillsandtoolsinthehandsofpatients.Thelinkbetweenhealthliteracyandhealthoutcomesiswellestablished38,butofteninterpretednarrowlyassimplygivingpatientsinformation.Beinginformedisjustpartoftheformulatobeingempowered,andprogrammessuchastheCareCompanionproject–aswellasUKinitiativessuchastheExpertPatientProgramme–showhowmuchmorecouldbedone.

“�� Professionals�need�to�come�off�their�pedestals,�but�patients�also�need�to�get�up�from�their�knees”�

Robert Johnstone, Board Member, International Alliance of Patients’ Organizations

2121


Recommendations (Part I)

Much�progress�has�been�made�by�recent�governments�to�empower�patients�in�the�UK,�but�many�more�changes�are�needed�to�meet�the�goal�of�becoming�“dramatically�better”.�The�following�practical�actions�suggest�ways�of�applying�the�lessons�from�other�countries�to�accelerate�progress�in�the�UK.

1 Makeempoweringindividualsintheirowncareatoppoliticalpriority–andalignincentivesforawhole-systemeffortacrossthehealthandcaresectors

TheUKhasdonemorethanmostcountriestoinvolvepatientsinmakingdecisionsaboutlocalservicesandstructures.Farlessprogresshasbeenmadetochangepeople’sroleintheirowncare.Changingtheroleofindividualpatientsintheirhealthandtreatmentisamuchgreaterchallenge,butwouldmakeamuchgreaterdifferencetothequalityandsustainabilityofUKhealthservices.Politicalandhealthserviceleadersshouldbeexplicitinmakingthispersonal,front-linedimensionofpatientempowermenttheirtoppriorityforreform.Awhole-systemeffortisneededtoachievethis.Reviewinghowincentivesacrossthehealthandsocialcaresystemscouldbebetteralignedtosupportthiswouldbeahelpfulnextstep.

2 Revivetherevolutionindecisionsupporttoolsaspartasasystematicdriveonshareddecisionmakingledbygovernment,theNHSandprofessionalbodies.

PatientDecisionAidsareamongthebestevidencedwaysofinvolvingpatientsinmakingshareddecisionsabouttheircare.AprogrammetodevelopasuiteofPDAsforcommonconditionsreceivedsignificantinvestmentfromgovernment,yetprogressappearstohaveslowedsincetheHealthandSocialCareAct2012wasintroduced–aresultofreducedcapacitytomanagetheprogrammeandcomplexitiestransferringitsadministrationfromtheDepartmentofHealthtoNHSEngland.Renewedpriorityandinvestmentisneededtoensurethisprogrammecontinuesatpace.

Atthesametime,arevolutioninthetake-upofPDAswillneedmorethanjustmakingthesetoolsavailable.Widespreadchangeneedsabiggerculturalpushonshareddecisionmakingwithmuchstongerleadershipfromprofessionalbodiesandprofessionalsthemselvestobetterpartnerwithpatients.

3 Givepatientsco-ownershipoftheirrecords,notjustaccess.

NHSEnglandisworkingtowardsagoalofgivingeverypatienttheabilitytoviewtheirGPmedicalrecordsby2015.Theexperiencesofothercountriessuggestthataccessaloneisunlikelytodrivesignificantuseofrecordsbypatients,butthatsomedegreeofco-ownershiporinteractivitywiththeirhealthinformationcan.Whileworkingtowardsthe2015goal,allfourhomenationsshouldalreadybeaimingfurther,withplansforsystemsthatbetterreflecttheprinciplesoftruepartnershipwithpatients.Thisshouldbealongsideinvestmentandtrainingforprofessionalstofacilitateadoptionanduseofthesesharedrecords.

22


4 Encouragepatientstoaskmorequestionsabouttheircare,throughanationalcampaigntargetedatpeoplewithlong-termconditionsandgreateraccesstostructurededucationonself-management.

Large-scalesystematicefforts(suchasJustAskinDenmark)andsuccessfullocalBritishinitiatives(suchastheHealthFoundation’sMAGICprogramme)showthatpatientandclinicianattitudescanbechangedovertimetoembracemoreequalpartnership.Governmentshouldseektoapplytheselessonsatanationalscalethroughacampaigntargetingpeoplewithlongtermconditionstodeveloptheconfidencetoaskmorequestionsoftheirclinicians–andpromptingprofessionalstoencouragebetterconversationstoo.Investmentshouldalsobeincreasedtoincreaseaccesstohighqualitystructurededucationforpeoplewithlongtermconditions,suchastheSelf-ManagementProgrammeandExpertPatientProgramme.

2323


Patient empowerment: The global picture

Though�there�is�a�great�deal�the�UK�can�learn�from�others,�at�a�global�level�it�is�clear�that�much,�much�more�needs�to�be�done�in�other�countries�too.�Rigid�and�hierarchical�systems�of�care�are�still�the�norm�across�most�of�the�world,�driven�by�poor�access,�lack�of�health�literacy�and�powerful�elites.�This�pattern�is�changing ,�however,�with�the�greatest�opportunities�to�be�found�in�emerging�economies�who,�free�from�some�of�the�baggage�of�mature�health�systems,�have�the�chance�to�embed�patient-centredness�at�their�foundation�as�they�develop.�

ManycontributorswithaninternationalperspectiveonpatientempowermentcommentedthattheNHSwas,despiteitsflaws,amongthebettersystemsintheworldintermsofpatientinvolvementandengagement.Objectiveinternationalcomparisonssupportthisobservation.39WhilethereisstillastrongcaseforradicalchangeintheUK,itisclearthatpatientempowermentisaglobalissue,notjustaBritishone.

Fromaglobalperspectivethegreatestbarrierstopatientshavingchoiceandavoiceintheircareinclude:4041

z Pooraccessto,andlimitedcapacityof,localhealthservices

z Lowlevelsofhealthliteracy

z Socialexclusionofmarginalisedorlowstatusgroups

z Corruptionanddominationbypowerfulelites

z Fewcivilsocietygroupswiththecapacitytoadvocateforpatients

z Littleformalacknowledgementofpatientrights

Therearemanyattemptstoovercomethesebarriersinlowandmiddleincomecountries.Accountabilityandcommunityparticipationarenowwidelyacceptedcomponentsofstate-buildingandinternationaldevelopment,withsignificantattentionandinvestmentbyindividualgovernments,theWorldBankandWorldHealthOrganization,amongothers.4243

Muchmoreisneeded,however,asthegeneralpictureremainsonewherethoseatthetopdeterminetheprioritiesandshapetheservicestoaddressthem.Patientadvocacyandcivilsocietyinmostlowandmiddleincomecountriesiscomparativelyweak.44Surveys–whichonlyscratchthesurfaceofpeople’spotentialcontribution–arestillviewedasthedominantmethodofengagingpatientsandlocalcommunities.Thegoalofappropriate,accessible,empoweringhealthcareisstillalongwayoffforthevastmajorityoftheworld’spopulation.45

“�� Patient�empowerment�isn’t�an�add-on.�It�leads�to�better�services�designed�in�a�way�that�families�are�able�to�access”�

Louise Hulton, Director, Evidence for Action

24


Thereisreasonforhope,however.Drivenpartlybynecessity,partlybynewtechnology(suchasmobilephones),manylowandmiddleincomecountriesareforgingadifferentpath.Inresponsetointolerablelevelsofunmetneed,newmodelsofcarearebeingadoptedwherepatientsarenotmerelyconsultedbutdeployedasafundamentalarmofhealthserviceplanning,design,deliveryandevaluation.4647Whilemuchofthisismakingupforanextremescarcityofhealthworkers,itiscreating–inplaces-anindeliblerealisationoftheimportanceofthepatientrole.48Thismaywellleadtoarapidconvergence–perhapsevena‘leapfrogging’–oflow,middleandhighincomehealthsystemsonpatientempowerment-relateddimensionsofquality.

Thesechangesarenotandwillnotbedrivenbyexternalactors,butbythecountriesandcommunitiesthemselves.Developmentagencies,donorsandhighincomenationsshouldbecarefulnotto‘mandate’patientengagementorpublicparticipationinlowandmiddleincomehealthsystems,asthereisastrongchancethismaybackfireornormalisehollowexercises.49Nonetheless,therearethingsthathigh-incomecountries–includingtheUK–candotosupportandencouragethistrend.

“�� We�believe�that�the�UK�can�play�a�very�strong�role�in�advocating�for�other�countries�that�are�developing�their�health�systems�from�the�ground�up�to�make�sure�that�patient�empowerment�is�built�in�from�the�beginning�rather�than�bolted�on�towards�the�end”


TheUKhasinthepastmadeseveralsignificantcontributionstosupportthepatientempowermentagendaataninternationallevel.First,Britishinstitutionsandleadershavebeenthesourceofmuchofthebestresearcharoundperson-centredcare,fromlandmarkreportssuchasAnOrganisationwithaMemorytolong-termprogrammesofevidencegenerationandreview,suchasthoseledbytheHealthFoundation.5051Secondly,theUKhascampaignedforgreaterpriorityofpatient-centredcareininternationalgoverningbodiessuchastheWorldHealthOrganization,resultinginimportantmilestonessuchastheLondonDeclarationonPatientSafetyandtheformationofthePatientsforPatientSafetyProgramme.Thirdly,theNHShasintroducedanumberofinitiativesthatothercountriesarelookingtoasinnovativemodelstoadoptoradapt,asthenextchapteroutlines.

The World Health Organization’s Patients for Patient Safety Programme

PatientsforPatientSafety–acorepartofWHO’sPatientSafetyProgramme-bringstogetherpatients,providers,policy-makersandthoseeffectedbyharmtoimprovehealthcaresafetythroughadvocacy,collaborationandpartnership.

Theprogrammehasmorethan300PatientsforPatientSafetyChampionsin53countries,themajorityofwhicharepatientsorfamilymembersaffectedbyhealthcareharm.ThechampionsintegratetheexpertiseofpatientsandfamiliesintotheworkoftheWHOPatientSafetyProgramme,aswellaspartneringwithotherorganisationscommittedtoimprovingsafetylocally,nationallyandinternationally.Theirworkspansalltypesofengagement,fromstory-tellingtoraiseawarenessandcatalysechange;tofacilitatingimplementationofWHOpolicy;tocontributingtoeducation,researchandpolicydevelopment.

Formoreinformation,seewww.who.int/patientsafety/patients_for_patient/en/

2525


What others are learning from the UK

While�there�is�much�for�the�UK�to�learn�from�others�about��empowering�patients,�our�review�also�found�many�ways�in�which��the�NHS�is�seen�as�in�the�vanguard�of�this�issue�internationally.�Overseas�contributors�highlighted�a�number�of�British�policies�and�practices�that�were�informing�other�countries’�approaches.�Strictly�speaking ,�many�of�these�are�aimed�at�involving�the�public�in�health�services,�rather�than�patients�in�their�own�care.�This�may�well�reflect�the�UK�having�made�greater�progress�in�reforming�structures�than�changing�the�patient-clinician�relationship.�

Patient focus enshrinedNationalpoliciesprovideacoherentframeworkandnarrativeoftheprioritygiventopatient-centredcare.FromtheformalrightsandvaluessetoutintheNHSConstitution;toNHSEngland’smandateto“ensuretheNHSbecomesdramaticallybetteratinvolvingpatientsandtheircarers”;tothecross-cuttingprincipleof“nodecisionaboutmewithoutme”;totheinclusionofpatientexperienceasoneofthefourdimensionsofservicequalityintheNHSOutcomesFramework;andanationalQualityStandardonpatientexperience.52535455Thesehelptoinstitutionalisetherightsandcentralityofpatientsacrossthehealthsystem.

TransparencyHealthsystemaccountabilityisagrowingpriorityofgovernmentstheworldover.AnumberofwaysinwhichtheNHShastriedtorealisethiswerehighlightedasgeneratingsignificantinterestabroad.OneofthesewasNHSEngland’spracticeofholdingitsboardmeetingsinpublic,withanaudio-visuallivestreamofproceedingsbroadcastinrealtimeovertheinternet.Anotherwastheavailabilityofinformationaboutlocalservices–includingperformanceratings,patientfeedbackandhealthadvice-throughEngland’sNHSChoicesorScotland’sNHSInform.

Patient involvement in researchSince2006,theUK’sNationalInstituteofHealthResearch(NIHR)–the£1billionresearchfundingandcoordinationbody–hasrequiredallresearchprogrammesitfundstoactivelyengagepatientsateverystage.Thisincludesfundingaspecialistnetwork(INVOLVE)toprovideacentralresourceofpatientsandmembersofthepublicinterestedinbeinginvolvedinhowhealthresearchiscommissioned,undertaken,communicatedandused.Inaddition,allresearchgrantapplicationstoNIHRmustspecifyhowtheyhaveinvolvedandplantoinvolvepatientsthroughouttheirstudy.AsimilarrequirementhasrecentlybeenadoptedbytheUSNationalInstitutesofHealth(NIH),amongothers.

26


An infrastructure for patient leadershipTheUKbenefitsfromstrongcivilsocietyorganisationsthatareabletoadvocateforpatientinterests.Non-governmentalorganisationssuchasMacmillanCancerSupportandNationalVoicesprovideabridgebetweenfrontlineexperiencesandnationaldecision-making.Allfourhomenationsalsofundnetworksoflocalpatientgroups,whichprovideaformalrouteforparticipatingindecisionsabouthealthservicepolicyandplanning.

An appetite for experimentationAlthoughspreadinggoodpracticeacrossthesystemremainsaweakness,localNHSorganisationsareperceivedasfertilegroundforinnovations.TherecentpilotsofPersonalHealthBudgets,wherepatientsaregivencontroloftheirownhealthcarebudgets,wereoneexamplecited.

2727


Recommendations (Part II)

Historically,�the�UK�has�been�an�important�leader�for�the�global�patient�empowerment�agenda.�This�is�a�role�that�government�should�aspire�to�continue�playing ,�by�working�to�change�intergovernmental�organisations�and�offering�British�expertise�to�countries�that�are�still�developing�this�agenda.�Three�actions�would�make�a�major�difference�to�the�UK’s�contribution�globally:

1 BringtogethertheDepartmentforInternationalDevelopment’sexistingworkstrengtheninghealthsystemswiththeexpertiseofBritishinstitutionsworkingtoempowerpatients.

DFIDassistsmanycountriestostrengthentheirhealthsystemsanddevelopgoodgovernanceandstrongcivilsociety.Itscapacitytoadviseintheseareasisbecomingincreasinglyimportantasitshiftsfromfinancialtotechnicalsupportinsomeregions,andpartnercountries’prioritiesmovefromverticalprogrammegoalstouniversalhealthcare.However,therearecurrentlyfewlinksbetweenDFIDandsomeoftheNHSinstitutionsandlargepatientorganisationsthatcouldprovideusefulexpertiseintheseareas.BodiessuchasHealthwatchEngland,NHSChoicesandNHSEnglandhaveyettofollowtheleadofNICEandPublicHealthEnglandindevelopinginternationalprogrammestolinkwithoverseasgovernmentsthatwishtolearnfromthem.Equally,grassrootspatientorganisationssuchasDiabetesUKandtheBritishHeartFoundationcouldalsomakeamajorcontributionbysharingtheirexpertise.

Astep-changeincooperationbetweenDFIDandthesebodiescouldproducevaluablesynergiesforall:DFIDwouldhaveaccesstoanewpoolofexpertise;NHSandpatientorganisationswouldgainanopportunitytobuildinternationallinks;andoverseaspartnerswouldhavethechancetolearndirectlyfromthesuccessesandfailuresoftheUKexperience.

2 Leadeffortstofillcriticalknowledgegapsaboutpatientempowerment,mostimportantlyitsvalueformoney.

Theevidencebaseonpatientinvolvementandengagementhasdevelopedsignificantlyinrecentyears,thanksinparttoresearchledbyBritishuniversitiesandinstitutions.Majorgapsremain,however,particularlyaround:

z Evidenceonthevalueformoneyofeffectivepatientempowermentinitiatives,particularlythefinancialcostsandbenefitsoflargescaleinterventions

z Developingandagreeingstandardindicatorstomeasuretheextenttowhichaservice,organisationorcountryispartneringwithpatients

z Operationaltoolstosupportchangeinfrontlinepractice.

28


Budgetpressuresonhealthcaremeanthatvalueformoneyisamajorconsiderationforhealthsystemsaroundtheworld.TheUKcouldgeneratesignificantbenefitsforitselfandothercountriesbyreviewingandimprovingevidenceontheeconomicimpactsofpatientempowerment.TheNationalAuditOfficewouldbeapowerful,well-placedleaderforthiswork.

3 Advocateforintergovernmentalbodiestoembedpatientempowermentacrosstheirhealthwork.

TheUKplayedacrucialroleintheestablishmentofthePatientsforPatientSafetyprogrammeintheWorldHealthOrganization.Thisinnovativemodelofbuildingpatients’perspectivesandenergyintoanintergovernmentalorganisationhasbeenagreatsuccess,howevertheideasbehindithavebeenslowtospreadtootherpartsoftheorganisation.TheUKshouldadvocatefortheWHOtoreviewitsstructureandoperationstodeterminewhereelsepatientsandtheirfamiliescouldbemoredeeplyembeddedandinvolved.

Furthermore,initsinvolvementinformulatingtheUN’sPost-2015globaldevelopmentframework,theUKshouldalsomakethecasefortheimportanceofstrengtheningthepatientroleinachievingtheproposedUniversalHealthcaregoal.

2929


1 DepartmentofHealth(2013)TheMandate:AmandatefromtheGovernmenttoNHSEngland:April2014toMarch2015

2 NHSEngland(2013)Transformingparticipationinhealthandcare.

3 DepartmentofHealth(2012)NHSOutcomesFramework2012-2014

4 NationalAdvisoryGroupontheSafetyofPatientsinEngland(2013)Apromisetolearn–acommitmenttoact

5 WorldHealthOrganizationWesternPacificRegion(2007)PeopleCentredHealthcare:APolicyFramework

6 WorldHealthOrganization(2013)Peoplecentredcareinlowandmiddleincomecountries

7 WorldHealthOrganizationEurope(2012)Health2020:AEuropeanpolicyframeworksupportingactionacrossgovernmentandsocietyforhealthandwellbeing

8 Edgman-LevitanSetal(2013)Partneringwithpatients,familiesandcommunitiesforhealth:Aglobalperspective.WorldInnovationSummitforHealth

9 WorldHealthOrganizationEurope(2013)Healthliteracy:thesolidfacts

10CoulterA(2011)EngagingPatientsinHealthcare.OxfordUniversityPress.

11CoulterA,EllinsJ(2007)Effectivenessofstrategiesforinforming,educating,andinvolvingpatients.BritishMedicalJournal335:24–7

12ElwynGetal(2010)ImplementingshareddecisionmakingintheNHS.BritishMedicalJournal341.c5146

13CoulterA,EllinsJ(2007)Effectivenessofstrategiesforinforming,educating,andinvolvingpatients.BritishMedicalJournal335:24–7

14RubakSetal(2005)MotivationalInterviewing:Asystematicreviewandmeta-analysis.BritishJournalofGeneralPractice55(513):305-12

15Lundahletal(2013)Motivationalinterviewinginmedicalcaresettings:asystematicreviewandmeta-analysisofrandomizedcontrolledtrials.PatientEducationandCounseling93(2)157-68

16ForderJetal(2012)EvaluationofthePersonalHealthBudgetPilotProgramme.DepartmentofHealth.

17StaceyDetal(2014)Decisionaidsforpeoplefacingtreatmentorscreeningdecisions.CochraneDatabaseofSystematicReviews1:CD001431

18ExpertPatientsProgrammeCIC(2010)Self-carereducescostsandimproveshealth–Theevidence

19InternationalAllianceofPatients’Organizations(2012Patient-centredhealthcareindicatorsreview

20DeSilvaD(2014)Helpingmeasureperson-centredcare:Areviewofevidenceaboutcommonlyusedapproachesandtoolsusedtohelpmeasureperson-centredcare.TheHealthFoundation.

21HibbardJ&GreenJ(2013)Whattheevidenceshowsaboutpatientactivation:Betterhealthoutcomesandcareexperiences;fewerdataoncost.HealthAffairs32(2)207-214

22CoulterA(2012)Leadershipforpatientengagement.TheKing’sFund.

23NHSInpatientSurvey2002–2012(www.nhssurveys.orgaccessed15/2/14)

24CoulterA(2011)EngagingPatientsinHealthcare.OxfordUniversityPress.

25Snowetal(2013)Whathappenswhenpatientsknowmorethantheirdoctors?Experiencesofhealthinteractionsafterdiabetespatienteducation:Aqualitativepatient-ledstudy.BMJOpen3:e003583

26FischerM&EreautG(2012)Whendoctorsandpatientstalk:Makingsenseoftheconsultation.HealthFoundation

27Prostetal.(2013)Women’sgroupspracticingparticipatorylearningandactiontoimprovematernalandnewbornhealthinlow-resourcesettings:asystematicreviewandmeta-analysis.TheLancet18;381(9879)1736-46

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28www.health.org.uk/areas-of-work/programmes/shine-eleven/related-projects/nhs-fife/

29TheHealthFoundation(2011)Canpatientsbeteachers?Involvingpatientsandserviceusersinhealthcareprofessionals’education

30Edgman-LevitanSetal(2013)Partneringwithpatients,familiesandcommunitiesforhealth:Aglobalperspective.WorldInnovationSummitforHealth

31DanishSocietyforPatientSafety&TrygFonden(2007)Patienthandbook:Apatient’sguidetoasaferhospitalstay(http://patientsikkerhed.dk/media/605495/patient_handbook2_.pdfaccessed6/1/14)

32AustralianCommissiononSafetyandQualityofHealthcare(2011)Patient-centredcare:Improvingqualityandsafetythroughpartnershipswithpatientsandconsumers

33CordingleyA(2009)WesternAustraliaHealthConsumers’Council:PatientFirstAmbassadorProject.HealthIssues98:12-15

34CrispN(2011)24hourstosavetheNHS;p72.OxfordUniversityPress.

35BoyleD&HarrisM(2009)Thechallengeofco-production.NewEconomicsFoundation

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40StockholmResearchNetwork(2013)PatientPower:Whatittakesforpatientsassociationstohelpshapepublicpolicy

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42Ibid.

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44StockholmResearchNetwork(2013)PatientPower:Whatittakesforpatientsassociationstohelpshapepublicpolicy

45WorldHealthOrganizationEurope(2012)Health2020:AEuropeanpolicyframeworksupportingactionacrossgovernmentandsocietyforhealthandwellbeing

46DecrooTetal(2012)AreexpertpatientsanuntappedresourceforARTprovisioninSub-SaharanAfrica?AIDSResearchandTreatment2012:749718

47ChukwumaA(2012)Theriseoftheexpertpatient:AfreshperspectiveonhumanresourceforhealthinAfrica.ConsultancyAfricaIntelligence

48BrandtA(2013)HowAIDSinventedglobalhealth.NewEnglandJournalofMedicine368:2149-2152

49MansuriG&RaoV(2012)Localizingdevelopment:Doesparticipationwork?WorldBank

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51www.health.org.uk/areas-of-work/topics/person-centred-care/

52DepartmentofHealth(2013)TheNHSConstitution

53DepartmentofHealth(2013)TheMandate:AmandatefromtheGovernmenttoNHSEngland:April2014toMarch2015

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55NationalInstituteofHealthandCareExcellence(2012)PatientexperienceinadultNHSservices.QS15

3131


Acknowledgements

The�All�Party�Parliamentary�Groups�on�Global�Health;�Health;�HIV/AIDS;�Global�Tuberculosis;�Patient�and�Public�Involvement�in�Health�and�Social�Care;�and�Population,�Development�and�Reproductive�Health�express�their�sincere�thanks�to�all�those�who�contributed�to�this�review,�without�whom�this�report�would�not�have�been�possible.

Those who gave oral evidence to the review:JoBibby, HealthFoundationAngelaCoulter InformedMedicalDecisionsFoundationLindaCraig InternationalAllianceofPatients’OrganizationsLiamDonaldson WorldHealthOrganizationLouiseHulton EvidenceforActionLukeO’Shea NHSEnglandJeremyTaylor NationalVoices

Those who submitted written evidence or were individual interviewees: GiftyAntwi KwameNkrumahUniversityofScienceandTechnologyAndrzejBauman PolishDiabetesAssociationJudyBirdsell PatientsforPatientSafetyCanadaMichaelBrookes HMPGrendonMaryChambers KingstonUniversityKatherineClouston Citizen,UKDominiqueCorti FondazionePieroeLucilleCortiOnlusSusanEdgman-Levitan JohnDStoeckleCentreforPrimaryCareInnovationBenjaminGerschlick TheHealthFoundationJoanneGraves InternationalAllianceofPatients’OrganizationsRexHaigh BerkshireHealthcareNHSFoundationTrustEmilyHenderson DurhamUniversityMichelleHeys UniversityCollegeLondonJaneHobson DepartmentforInternationalDevelopmentRobertJohnstone InternationalAllianceofPatients’OrganizationsPeterJones IndependentResearcherEdwardKelley WorldHealthOrganizationSteveLaitner FreelanceHealthConsultantHelenaLegido-Quigley LondonSchoolofHygieneandTropicalMedicineEllosLodzeni PatientSafetyChampion,MalawiKimberleyLittlemore LittlefoxCommunicationsGrahamMartin UniversityofLeicesterBrigidMcConville WhiteRibbonAllianceSarahOlver InstituteforHealthcareImprovementIlariaPassarani BEUC:TheEuropeanConsumerOrganizationNittitaPrasopa PlazierWorldHealthOrganizationAudreyProst UniversityCollegeLondonKarthikRamakrishnan NarayanaHealthMikeRigby CumbriaPartnershipNHSFoundationTrustRachelSeal-Jones InternationalAllianceofPatients’OrganizationsDavidSomekh EuropeanHealthFuturesForumNeilSquires DepartmentforInternationalDevelopmentSophieStaniszewska UniversityofWarwickFionaStephenson HaitiSpinalCordInjuryWorkingGroupAnne-ClaireStona WHOCollaboratingCentreforMentalHealthShamsSyed WorldHealthOrganization

32


VictoriaThomas NationalInstituteforHealthandCareExcellenceEricTsetekani MaikhandaTrustRakeshVerma NarayanaHealthDimitriVarsimis NHSEnglandSherryWorsham HarvardUniversity

BasicNeedsCanadaHealthInfowayCHEN–PatientFertilityAssociationChildren’sHeartlinkEuropeanSocietyforQualityinHealthcareInternationalMedicalCorpsMarieStopesInternationalMicroclinicInternationalOverseasDevelopmentInstitutePatientsforPatientSclerodermaSocietyofthePhilippinesSheffield-GuluMentalHealthPartnershipSightsaversTargetTuberculosisTASOUganda

Parliamentarians who took part in this reviewRussellBrownMPSarahChampionMPLordCrispBaronessCumberlegeViscountEcclesMegHillierMP(Chairofreviewsteeringgroup)BaronessJollyBaronessMashamLordMcCollLordPatelLordRibeiroLordSwinfenBaronessTonge

This review was funded by the All Party Parliamentary Group on Global Health, who would like to thank their supporting organisations:Bill&MelindaGatesFoundationCambridgeUniversityHealthPartnersImperialCollegeLondonInstituteforGlobalHealthInnovationKing’sHealthPartnersTheLancetLondonSchoolofHygieneandTropicalMedicineManchesterAcademicHealthScienceCentreUniversityCollegeLondonGrandChallengeofGlobalHealthUniversityofOxford

Des

ign:

Ark

,Lon

don

AllPartyParliamentaryGroup(APPG)onGlobalHealthOfficeofLordCrisp,FieldenHouse,13LittleCollegeSt,London,SW1P3SH

+44(0)[email protected]

www.appg-globalhealth.org.uk

APPGonGlobalTuberculosisOfficeofAndrewGeorgeMP,HouseofCommons,London,SW1A0AA


www.appg-tb.org.uk

APPGonHIV/AIDSOfficeofPamelaNashMP,HouseofCommons,London,SW1A0AA


www.appg-aids.org.uk

APPGonPatientandPublicInvolvementinHealthandSocialCareOfficeofJohnPughMP,HouseofCommons,London,SW1A0AA

+44(0)2072198318

APPGonPopulation,DevelopmentandReproductiveHealthOfficeofBaronessTonge,FieldenHouse,13LittleCollegeSt,London,SW1P3SH


www.appg-popdevrh.org.uk

May2014

patient empowerment: for better ... - appg global health · patient empowerment: for better...

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