Putting Patients and Public First 24 January 2011
Choice +ve -veConstraints – “The level of choice I want....” Sometimes I just want a coffee (not latté, cappuccino etc) Is true choice really possible within the current economic climate? Get thehow realistic? People don’t necessarily make expansive choice. Some evidence may scare many. basics right. Need to get the basics of care right before choice We can’t afford it! Young people may not have the confidence to access services. May prefer anonymous Can only have choice in a free (not quasi) market access as first step. Choice is constrained by what (others) decide is availablePre-requisites – ‘The community’ is not homogenous – consult with all to find out what theirfor all needs and beliefs are! Health literacy Socio-economic experiences Some people (hard to reach) have no choice Choice based on health needs of community Consult with young people to know what the needs arePre-requisites – Patients can make the ‘wrong’ decisions about their caresupport or risks Need to have capacity to enable choice fairness and incentive to maketoo better services Uniformed choice is worse than no choice Do we have information to make wise choices? Illusionary in Shire counties with one hospital Building capabilities of making informed choices Remember there is a ready pool of intelligence through PALs data, complaints and existing experience data – don’t restart thisMaking it Choice is not just information – evidence is that behaviour only changes when information is Choice needs to be relationship based “The Choice Culture”Meaningful supported by a human Choice of what I want to know Choice of treatment option – is empowering better outcome better experience Need to understand what choices are out there of services And more appropriate use of services Need care over how this works for the frail, aspects of mental ill health Needs to be primarily about choice of treatment and choice of “prime provider” for locality by CommissionerPotential for Most specific definition of what are critical success areaschoice Informed choice will drive efficiency Choice (will drive requirement for better info on health care services) requires good and accurate information to patients and commissioners Choice of GP Choice gives me control and convenience and drives quality Could improve Choose & Book to deliver choice of diagnostics Choice will lead to change in health services and deliver convenience and ensure control Will promote quality diagnostics (test and interpreting) to drive choices Opportunity to “transform” service” Will increase quality Services will have to respond to people’s preferences Allows for variation and flexibility Choice is correct at all points in pathway not just “transparency” up front of information pressure points Will promote real, real-time quality information about pathways “Meaningful choice” will encompass having enough information, healthy literacy, access etc – or that should be aspirations
Choice contd....• The right incentives ensure I have the level of control I want at that point; services are responsive to me and appropriate for my wider communities, tackling inequalities to create a different sense of control and influence in service delivery and design grounded in mutual respect• Effective and appropriate choice for all of us is supported by accurate, timely and relevant information which highlights service quality to deliver effective decision-making in favour of best outcomes• services make best use of technology to ensure convenience efficiency and availability
Convenience +ve -ve People want it – so they can work / live There is a big risk that convenience will their own way – relative to what they crowd out quality want. New ways of working (better quality information) can make it more efficient too. (Right care, right place, right time is convenient. Evolving and taking people with us +ve -ve• Created around the needs of human lives not structures and systems • Convenience should b e shaped by individual life / design. Technology is• Technology has enormous potential to underpin control and transform helpful as one of a number of enablers• Needs to be convenient to people’s lives – multiple and simple access • Putting resources into ‘convenience’ empowers people who are already points. Navigators through system. empowered – leaving less resources for those who need them most• .... is central to a partnership approach. Means different things to different • Not enough reference to people in the definition people! • Least substantive. Follows choice and control• Adopt the philosophy of customer services – fit the needs of the patient, not • Service – not the 9-5 mentality needs to be the culture the systems of ‘the system’ • It’s not just about technology – people need information in different formats• Able to do more myself if I have the tools / channels. Therefore definition too restrictive• Technology key to accessing information / services but being in control of • Quality and access is more important than convenience that • Does not necessarily deliver efficiency• Will increase access. Can we cope with increased demand. • Costly and could limit quality• Opportunities for doing more ourselves in different ways • Convenience is part of choice and control – don’t need separate ‘box’• As the cuts bite I’ll be fighting to preserve convenience of existing services • Cynicism due to NHS history in its use of technology• Simple to use, reliable systems which work (see OCADO or Tesco) • Can limit equity• Young people ‘get’ technology – need to build services for them around this • Not a mechanism for change – they are digital activists • ‘Convenience’ sounds very weak alongside choice and control• Facebook consultations + video Skype + “track my healthcare”
Control +ve -ve Control for choice, self-empowering, local Poorly defined / vague. Negative empowerment connotations “no control”, “control of Control should be “partnership in what?” decision making” Democratic accountability +ve -veFirst point of control: scrap the words patient, client, service Control = information sharing. Does this lead to choice?user and talk about people! The politicians (and doctors?) are controlling this agenda – not the peopleControl is dynamic – will continue no matter what stage in life Having / being in “control” comes from being well informed and empoweredReform clinical education and training Much more support needed to empower clients / patientsListen to young people Use simple language. Exercise respect for each otherControl frees people to get on with life Navigation is a key part. Control sounds too mechanistic. How can we effectively plan servicesService that is tailored for me as an individual on a population basis, achieve critical mass if individual / communities dictate control andLack of control is very stressful therefore provider market?People centred This term will turn off health professionals and backfirePutting communities in control – co-production Young people should be heard as equals. Do we have any control?Because small changes can make a big difference Do people have access to core communication support to exercise it?Makes best use of the person in bed 7 How will this work – not confident that this will happenControl = choice and convenience (I agree – we only need Should be more ‘partnership’ – control implies unequal power relationship‘control’) Need to discuss bigger ‘control’ issues – what do we pay for? What should NHS do?“I have the level of control I want at any point” i.e. sometimes I It’s hard to share control – but actually health professionals and patients need to work togetherdo, sometimes I don’t Badly defined – I don’t understand what this means (not me, I agree)Self efficacy is crucial as experience and outcome measure “I know my rights” – unpleasantnessTransparency Who controls? Negative connotationsEnabling individuals to co-ordinate in ways that work for them Do people have cognitive ability to exercise it?Local and early input to all decisions Is confidence a better term. People have confidence in their role and servicesEnables me to refer myself Patients empowered to challenge basic NHS care i.e. have you washed your hands? Have I‘Giving’ control is doing things to people (again). Allow have m VTE risk assessment?people to take control if they wish How do you integrate and differentiate services for any one individual? Language is impenetrable. Articulate what this means in brief phrase or analogy In this context, how are services designed strategically? Opt in = no sharing Opt out = progress Control of what? Specific services for young people and their needs – informed by young people Language
New GoalsCross cutting – preserve and protect what works now through transitionCreate incentives and reduce cost Mutual respect• £ Patients in reality! • Trust, respect, partnership• Cash incentives understood • Valuing staff and service users and carers• Carrots & sticks? Otherwise just nice ideas • Diversity within health care profession – able to put yourself in other’s shoes e.g. what• £s must really – all citizens, patients, hearts and minds will follow does it feel like for a homeless young person with drug issues• Cost less – more efficient better value and return • NHS constitution rights and responsibilities – individual good Vs community collective good • Confidence. Need to have trust in technology, services, information, people • Integration. Professionals and services working around and with me• Quality – reflected explicitly in all Tackle inequality• Clinical outcomes – day/treatment remission • Fairness, access, equality• Quality – 100 miles away –good surgeon doing operation he didn’t want • Unmet need – awareness, diagnosis, action• I don’t care about convenience, control or choice. I just want quality • Consistency – fail safe for people without choice and control• Better information and metrics to inform development of clinical outcomes • The private interests will have alternative agenda e.g. cancer drugs. What is this change ~~~~~~~~~~~ increases risk and uncertainty.• I don’t want choice, control, convenience, I just want quality • Values and preferences of equal consideration when evaluation outcomes• Choice, control, convenience is part of quality• Accountability & responsibility Collective and Togetherness• Leadership • Structure / models needed for communication to decision maker. What does quality• Effective management as a driver mean to communities? • Co-production communities and services • Community / collectives – people coming together to drive quality and the system. The current SCs are about isolated individuals. • This agenda is about shifting power in the system. This will only happen if we help communities to organise • Localism and individualism – 65 million solutions required! • Local / individual is not enough. Collective and national patient input is critical • Developing community support – if this is about shifting power it has to be about organising and collectivism • Connection – this is too NHS centric – need to look at the connections outside of healthcare – lifestyle / social determinants etc • Using patient voice collectively to drive future change – not just choice, control, convenience nowHealth & Happiness• Culture and relationship s – equity, resources to change, accountability, services change, values, empowerment• Happiness – why are we seeking good health and how?• Train PE at medical school as core curriculum• Leave people’s ‘culture’ along – just do things differently• This should be about health. The NHS needs to look at creating and maintaining wellness and wellbeing• This needs to be all about people! Start with the person, their goals and what they want in their lives and use that to shape services. Healthcare is important but none of us is just a ‘disease’ or a ‘user’. Please – Choose Life!
World CafeTopic Description1. Customer Insight and feedback To develop a systematic, increasingly comprehensive approach to customer insight including population Host: Daniel Metcalf preferences and lay beliefs across the diversity of communities and client groups using health and social care services, and systematic, comparable feedback about customer experience and expectations3. Shared decision making To make a reality of ‘no decision about me without me’ as the norm of patient / service user experience’ Host: Marion Collict across health and social care interactions4. Maximising the convenience of services Identify opportunities to significantly improve the convenience of service access and delivery, drawing on Host: Nick Chapman learning from other sectors and the potential particularly of phone and digital technology to deliver services in new more responsive, efficient and sustainable ways5. Information and technology Architecture Identify architecture challenges and changes required to support information transparency, access,to support system delivery remote and mobile working and other implied changes; including information standards and governance, Host: Inderjit Singh inter-operability and ‘open’ systems6. Choice (of style and provider) of services Significantly escalate scope and scale of current offer of choice of provider and extend to choice of style Host: Rebecca Chaloner and type of treatment or service across an increasingly broad range of client groups.7. Supporting people with Long TermConditions to self-manage8. Community Accountability – Developing Drawing on feedback to recent consultations and learning from previous structures, to maximise theHealthwatch arrangements opportunity for HealthWatch at a national and local level to act as a channel for local people to hold Host: Mary Simpson commissioners and providers to account for the effectiveness, responsiveness and relevance of services.9. Community Accountability - opportunity To explore opportunities to develop a range of mechanisms by which publicly funded health and carefor broader accountability investment is able to give an account to and be held to account by local people; which supports active Host: Mike Warburton local participation in influencing and commenting upon service investment, design and performance.10. Organisation & Visibility of Information Develop information supply, analysis and presentation to ensure informed decisions by commissioners, Host: David Knight service providers and citizens supporting responsible choices in style, nature and provider of health and care services at a system level. At an individual level this should support shared-decision-making and choice and facilitate collation and analysis of individual experience and outcome.
Customer Insight and Feedback Success factors Applying insight, Leaders valuing not just gathering insight, using it it. Seeing it as and making constructive changes as a feedback, not result Gathering the ‘criticism’ right sort of Using the rich and Higher information – Culture change varied sources of patient/public segmenting but – bringing data in the system service also aggregating patients, Better outcomes from the already e.g. PALS, expectations where needed carers, staff patient’s / people’s complaints etc together perspective – putting the ‘S’ (service) in NHS. Using insight to achieve all of this. Every rotation/Importance of getting a refresher Patient insight/improving services •Training for new clinicians every six months when they’re learning •Discuss with patients the care they want and work with them to set expectations •Start a debate to challenge attitudes of different •Staff feeling dis-empowered clinical professions to others to make changes•Providers – being distinct, •Real time feedback on clinicians – individual level – everyoffering better quality services to patient, every interaction, on key metrics and subjective drivers •Language – not speaking thesurvive in a competitive market •Systematic publication of clinician data – easy to use, quick to access – language that patients use•Commissioners – having realistic showing success rates, applying peer pressure on others •Qual data becoming •GPs have to ask patients if they’re happy with service at the end of meaningless – translates intodialogue with patients / public each consultationabout the services they can reports which lose the human Bold Steps to Delivery elementcommission with money they Mediahave A system that pulls together ALL the Governance / improvement at a local level. Media Key Contacts existing data – qual/subjective and quant surveys e.g. Picker, Dr Foster, Enable every patient /service user to feedback quant & qual data about their Penny Woods, Picker Institute PETs, patient opinion, 1:1 interviews, interaction after every interaction and complaints, In Your Shoes, publish the data/drivers about each Tim Keogh, April Strategy compliments, NHS Choices and display individual clinician/service so they have the Andy Donald, BEN it as insight I can do something about information to improve
Shared decision making Success factors A different culture – the SDM access public need health and to get it as social care Open well SDM is the sharing of ‘glue’ lack of evidence Involving and Sharing of empowering the Map information patient / customer to appropriate and control make decisions that care are right for them Deep and broad strategy -Patient access to info - Community org/social marketing to • Communication – everyoneRegular feedback (Tahir’s model) shift power (clinicians) needs to know their rightsDecision support -Learning from Social Care and Maternity and responsibilitiesQIPP, FIDM / Year of Care / GCGP - Change of clinical norm by patient •ValuesClinical Nurse Specialists - Co-signatory system in primary care •TechnologyNHS DirectCommitted clinicians •Lack of confidence •Discrimination → BME!!Specialist clinicsRecord access / control Bold Steps to DeliveryNICE standardsNHS-CB guidanceNational strategies Key Contacts Tahir Mahmud (firstname.lastname@example.org)Third Sector knowledge Helen Whitworth (email@example.com)Evidence base Consultant forensic psychiatrist (Stafford Prison) – verySocial marketing to clinicians and interested in contributing (friend of Julie Beedon)commissioners
Maximising the convenience ofservices Success factors Multi- Affordable channel and and integrated sustainable Easy Appropriate structured management self-service of risk Quality services, Easy for efficient for patient High quality both (effort) and NHS & evaluation & insight • Digital channels as default “web first” to revolutionise access, advice & response • Perverse financial •Create new patient-focused processes and incentives: i.e. FootfallConvenient services: align financial incentives (GP consortia contracts from NHS) • Cultural/attitudinal: fear,• Can be cheaper and we’re risk aversion, low morale.... •Professional engagement and leversbeginning to notice there’s a •Amplify the patients voice Traditional(severe!) cash shortage •GP choice – any willing provider • Lack of information for all• Can be delivered with new • No harnessing innovationtechnology and we’re Bold Steps to Delivery • Scalerecognising and learning fromhow others use technology• Can be found all over the NHSand we’ve a great opportunityto learn from the best
Information and Technologyarchitecture Success factors Catalogue – Information consumer I can trust guide Using my Inter- channel of operability choice Information available Personalised in a form that allows Convenience care plans informed decision in use – my making and transact default - Supported, relevant information throughout journey of care 3. Find – create market that will be the best ways of making more use of commercially / publicly available No incentive to publish infrastructure Lack connectivity Opt-out as default 2. Incentivise payment for treatment via non-F2F channels Lack permission “too NHS” Publish existing data, with interpretation Add cost, reduce value 1. Minimum dataset in correspondence between 20 care Consortia demand and commissioner to trigger payment Identify mutual benefit Demonstrate best practice Bold Steps to Delivery
Choice (of style and provider) ofservices Success factors Choice – 3 Listening legged stool: better to Choice, more people who accessible info don’t get Diversity of & confidence Get listened to integrated commissioning providers right: balancing offering joined different needs up service Safeguarding Letting things the vulnerable: Improving quality / fail: learning not just up to health and wellbeing from that to market. Role get better of the State services Provider reputation •Baseline it! •Introduce choice modules into education, revalidation and appraisal •The NHS •Increase patient input in commissioning and •Location and geography •?Lack of resources decommissioning •Technology •Transparency of information •Service failure and best practice reviews involving •Culture (good) •Bureaucracy patients! •Technology •Culture (bad) •Introduce choice as early as possible •Ask when well and after the •111 people make lousy shoppers event Bold Steps to Delivery •The evidence industry
Supporting people with LTC toself-manage Success factors Supporting ideas Build skills in people - Capability & Collaboration Integrated and seamless care and - Participative care and actions confidence - cognitive skills, plan flows of informationHealth Literacy: - Help to navigate - efficacious – see it- Good access to up to date information as my thing to self through services- That I understand manage Clinicians as coaches and- All looking at same info. Individual – tailored to facilitators &Shared experience and peer support and my education style guides – NOT - Language Incentives thataccess to people like you plus valid gatekeepers / reward the right - Abilities barriersexpertise interventions andUse of info channels e.g. The media, behaviours –new tech channels, social media Supporting people with LTCs to develop budget around confidence and skills to manage their own care plans Clinicians – new skills health including their LTC and helpingI’m the driver of decisions, treatment -self-management support High quality = BOTH – clinicians to develop skills “let go” and help high quality evidence-and setting my own goals – proactive so is a clinical skill people finally change how they work to -Motivational interviewing based care and set andI stay well, I feel I am doing better to develop self-management support as a manage my own goals -Manage the conversationfeel better myself in a way that works for clinical skill – help people to find own each individual solutions in context of own life. 1. Patients - access to records - access to meaningful information•Use Health & Wellbeing Boards to influence local 2. HCP - coaching and supportcommissioning decisions for SMS - training in SMS as a clinical skill Professionals don’t relate to / drive self-•Self-advocacy - clinical advocates who say it improved their job•Mobilise patients to expect / demand SMS from their health management satisfaction & outcomes Variable quality of I.C. – from great toprofessionals - measuring confidence to self-manage and seeking unacceptable•Connecting with community support•Support learning across and from long-term conditions and to improve it No way of knowing where/if we are 3. Systems: - measure, incentivise and reward clinicians and systems forlearning from other sectors e.g. Social Care, Housing getting it right•Power of personal stories to influence attitudes and practice delivery of the aim above Not having access to information•Lots of different ways to learn Italian incl LA sponsored course Re-write the Hippocratic Oath around the aim above – rearticulate role of (patients)•Clinical leadership & champions are critical heathcare Not part of a whole system (YOC House)•Generic LTC guidance for commissioners from NCB notcondition by condition Bold Steps to Delivery We do it already – my patients don’t want this•Examples where this is being done successfully & lessons toshare•Give GP commissioners the evidence re the effectiveness of Key Contacts Incorporate SMS into re-validation process and appraisal processesself-management support inc courses Taher Mahmud Existing funding system doesn’t•Do what we know works already Tim Keogh – April Strategies reward/fund peer support•Quality standards reflect and incorporate best practice Health Foundation’s Co-Creating Health initiative (Natalie Grazin)•Measuring meaningful outcomes: confidence, skills, support•Peer support is a key enabler for individuals to self-manage•What is good for patients is good for clinicians is good for NHS
Community Accountability – DevelopingHealthWatch arrangements Success factors Independences Expertise Robust, Services clearly responsive to accountable Healthwatch governance (s?) The local system responds to HealthWatch as the Inclusivity Committed authentic, credible, influential and diversity volunteers voice for citizens, service- users, carers, communities Communicate the story. Develop information to as well as from HW Behaviours – patients and Duty to involve Make sure public health is included clinicians Hwatch England Realistic discussion with LA and PCT/GPC Rt funding for HW Reputation of LINKS Stronger governance HWE prioritise guidance / leadership on EDHR Cynicism Links between consortia and HW to develop real participation Over-promised Held to account for effectiveness Focus on outcomes Funding pressures – LA as well as Health Bold Steps to Delivery Key Contacts Katy Wing - NAVCA
Community Accountability – Opportunityfor broader accountability Success factors Partnership / Confidence co-design Transparent information Responsive and useable Real sanctions if services fail, information otherwise it doesn’t support engagement Valuing it – money Stability in the structures Appropriate engagement and Clarity of involvement of local citizens is purpose and holding all parts of the health Central shared engagement and care system to account principles Framework -Local organisation CVs to be involved -Communities of interest – how can events be supported -Leadership that champions PPI•Use existing knowledge - Inequalities duties – support needed • use voluntary organisations, Charities, Commitment to peer review → transparent and shared •Transaction cost of doing it → Specialist groups share learning across Build in partner experience into Tariff (NICE, CQC – engage,•GP’s getting involved / ‘facing up’ •What do travellers with brain consult and development) to underline the importance•Use of GP Books to communicate injury need “generally?”•Role modelling by DH/NHS CB leaders Centrally & Locally -Engage Voluntary Organisations / Charities – existing knowledge / best practice •Reduction – management•Transparency of Consortia – level data,comparative data -Why should they engage them? Actions Locally / Nationally resource and infrastructure•Clear accountability to the NHS CB -Need to be representative •Local politics / election → HOSC →•Set of role / framework – expectations clear H&WBB•Importance of leadership in developing a culture Bold Steps to Delivery •Moneythat supports engagement •“Command & Control”•Share existing Best Practice – practical resource Clear framework for NHS CB – needed early •Salient control•Honesty Clarity of role of all staff in engagement•Engage earlier and more “totally”•Health & Wellbeing Board – need to ensure it Learn from other sectors/LAhappens -Participatory budgeting / personalised budgets•Real engagement → change things Capture and package for Consortia•Demonstrate it changed Help people navigate new system
Organisation and Visibility ofInformation Success factors People Open know how information and where drives to access quality Share info information – All electronic effective recording is communication normal (talk!) Success in people who Patients have a right Intermediaries have been to access their own are using able to access information* *to records about their own information treatments etc, and info! about hospitals etc One “front end” to all on-line info (a la “Facebook for Health” / Amazon) as a way to get at all on-line “trusted” data Unequal access to I.T./digital Clarify once for everyone rules on governance of exclusionTransparency re cost of services records (access and control)Universal information/self Lack of availability of data Make all records join up across H/SC organisationsmanagement as prevention Support in place for those who can’t access IT but need to Information sharing betweenClarifying information governance Set of clear Inf sites used by all agencies / systems not talkingLinked information that helps us Demonstrate how info has improved care / quality / experience to each other including healthunderstand public health issues & SC Bold Steps to Delivery Problem of quality assurance /Clear data standards reliability / knowing what D needs a Big National Push information to trust