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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 globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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.
Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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
Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
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
Patient empowerment: for better quality, more sustainable health services globally
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
Reported in 16 reviews: 10 positive, 5 mixed, 1 negative
Reported in 14 reviews: 9 positive, 3 mixed, 2 negative
Reported in 13 reviews: 4 positive, 6 mixed, 3 negative
Improving clinical decision making
22
Reported in 10 reviews: 8 positive, 2 mixed
Reported in 19 reviews: 12 positive, 6 mixed, 1 negative
Reported in 10 reviews: 6 positive, 4 mixed
Reported in 8 reviews: 2 positive, 1 mixed, 5 negative
Improving self care and self management of chronic disease
67Reported in 19 reviews: all positive
Reported in 40 reviews: 24 positive, 11 mixed, 5 negative
Reported in 25 reviews: 14 positive, 9 mixed, 2 negative
Reported in 50 reviews: 39 positive, 15 mixed, 6 negative
Improving patient safety
18Reported in 4 reviews: all positive
Reported in 1 review: positive
Reported in 3 reviews: 2 positive, 1 negative
Reported in 17 reviews: 8 positive, 9 mixed
ReproducedfromCoulterA,EllinsJ(2007)Effectivenessofstrategiesforinforming,educating,andinvolvingpatients.BritishMedicalJournal335:24–7,withpermissionfromBMJPublishingGroupLtd
1111
Patient empowerment: for better quality, more sustainable health services globally
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
Patient empowerment: for better quality, more sustainable health services globally
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.”�
Linda Craig, Operations Director, International Alliance of Patients’ Organizations
1313
Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
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
Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
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?
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
4 Encouragepatientstoaskmorequestionsabouttheircare,throughanationalcampaigntargetedatpeoplewithlong-termconditionsandgreateraccesstostructurededucationonself-management.
Large-scalesystematicefforts(suchasJustAskinDenmark)andsuccessfullocalBritishinitiatives(suchastheHealthFoundation’sMAGICprogramme)showthatpatientandclinicianattitudescanbechangedovertimetoembracemoreequalpartnership.Governmentshouldseektoapplytheselessonsatanationalscalethroughacampaigntargetingpeoplewithlongtermconditionstodeveloptheconfidencetoaskmorequestionsoftheirclinicians–andpromptingprofessionalstoencouragebetterconversationstoo.Investmentshouldalsobeincreasedtoincreaseaccesstohighqualitystructurededucationforpeoplewithlongtermconditions,suchastheSelf-ManagementProgrammeandExpertPatientProgramme.
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Patient empowerment: for better quality, more sustainable health services globally
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
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Patient empowerment: for better quality, more sustainable health services globally
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”
Linda Craig, Operations Director, International Alliance of Patients’ Organizations
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/
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Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
An infrastructure for patient leadershipTheUKbenefitsfromstrongcivilsocietyorganisationsthatareabletoadvocateforpatientinterests.Non-governmentalorganisationssuchasMacmillanCancerSupportandNationalVoicesprovideabridgebetweenfrontlineexperiencesandnationaldecision-making.Allfourhomenationsalsofundnetworksoflocalpatientgroups,whichprovideaformalrouteforparticipatingindecisionsabouthealthservicepolicyandplanning.
An appetite for experimentationAlthoughspreadinggoodpracticeacrossthesystemremainsaweakness,localNHSorganisationsareperceivedasfertilegroundforinnovations.TherecentpilotsofPersonalHealthBudgets,wherepatientsaregivencontroloftheirownhealthcarebudgets,wereoneexamplecited.
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Patient empowerment: for better quality, more sustainable health services globally
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.
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Patient empowerment: for better quality, more sustainable health services globally
Budgetpressuresonhealthcaremeanthatvalueformoneyisamajorconsiderationforhealthsystemsaroundtheworld.TheUKcouldgeneratesignificantbenefitsforitselfandothercountriesbyreviewingandimprovingevidenceontheeconomicimpactsofpatientempowerment.TheNationalAuditOfficewouldbeapowerful,well-placedleaderforthiswork.
3 Advocateforintergovernmentalbodiestoembedpatientempowermentacrosstheirhealthwork.
TheUKplayedacrucialroleintheestablishmentofthePatientsforPatientSafetyprogrammeintheWorldHealthOrganization.Thisinnovativemodelofbuildingpatients’perspectivesandenergyintoanintergovernmentalorganisationhasbeenagreatsuccess,howevertheideasbehindithavebeenslowtospreadtootherpartsoftheorganisation.TheUKshouldadvocatefortheWHOtoreviewitsstructureandoperationstodeterminewhereelsepatientsandtheirfamiliescouldbemoredeeplyembeddedandinvolved.
Furthermore,initsinvolvementinformulatingtheUN’sPost-2015globaldevelopmentframework,theUKshouldalsomakethecasefortheimportanceofstrengtheningthepatientroleinachievingtheproposedUniversalHealthcaregoal.
2929
Patient empowerment: for better quality, more sustainable health services globally
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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29TheHealthFoundation(2011)Canpatientsbeteachers?Involvingpatientsandserviceusersinhealthcareprofessionals’education
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55NationalInstituteofHealthandCareExcellence(2012)PatientexperienceinadultNHSservices.QS15
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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
Patient empowerment: for better quality, more sustainable health services globally
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
+44(0)[email protected]
www.appg-tb.org.uk
APPGonHIV/AIDSOfficeofPamelaNashMP,HouseofCommons,London,SW1A0AA
+44(0)[email protected]
www.appg-aids.org.uk
APPGonPatientandPublicInvolvementinHealthandSocialCareOfficeofJohnPughMP,HouseofCommons,London,SW1A0AA
+44(0)2072198318
APPGonPopulation,DevelopmentandReproductiveHealthOfficeofBaronessTonge,FieldenHouse,13LittleCollegeSt,London,SW1P3SH
+44(0)[email protected]
www.appg-popdevrh.org.uk
May2014