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Ppe Paper For Cc Gs Towards Authorisation And Beyond
 

Ppe Paper For Cc Gs Towards Authorisation And Beyond

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Synthesis of patient public engagement for CCGs 2012

Synthesis of patient public engagement for CCGs 2012

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    Ppe Paper For Cc Gs Towards Authorisation And Beyond Ppe Paper For Cc Gs Towards Authorisation And Beyond Document Transcript

    • PPE - A synthesis of perspectives for CCGs towards and beyond authorisation compiled by Jane Keep, Associate, Healthskills February 2012Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Contents:1. Introduction2. The Impetus - why bother with PPE?3. Where is PPE now? a. New context old legacies - particularly in economic terms b. Clarity around the levels of PPE - collective and individual c. The language and meanings - of PPE4. It’s all about people and relationships5. It’s not just about patients and the public6. Other stakeholders and relationships7. Information8. The Move Towards Self care/self management9. Things to consider going forward/setting conditions, building on assets10.Ensuring PPE is effective11.Governance12.Ethics13.Websites, and other resources a. governance b. Patient Participation Groups (PPGs) c. staff/workforce engagement d. self management e. patient participation, lay health workers, other PPE initiatives f. Personal health budgets and disability ‘right to control’ g. the High street14.Models15.Tools and Techniques16.References (and further information, more websites)Appendix 1. Diagnostic questions to ask as a CCG going forwards, towards andbeyond authorisationAppendix 2. NHS Patient Experience Framework.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • PPE - A synthesis of perspectives for CCGs towards and beyond authorisation (Compiled by Jane Keep, Associate, Healthskills - February 2012)1. IntroductionThis paper is a synthesis based upon the vast amount of new (and old) policy papers,guidance notes, workshop materials, approaches and systems relating to engaging,empowering, and involving patients and the public, and engaging the workforce, mostof which have been taken from guides and papers about developing CCGs. It is notsuggesting what is here written is ‘the way’ forward, more it is presenting somequestions, challenges, ideas and options as to the way forward in supporting CCGstowards, and beyond authorisation. At the end of this paper is a list of some of thecurrently available resources and websites relating to engaging, empowering andinvolving. This paper is not about broader communications (or the media), althoughpatient and public engagement (PPE) is part of communications. For the purpose of thispaper the shortened term ‘PPE’ has been used, but as noted in this paper, there aremany terms that could be used. The paper is not meant to be rocket science, nor a peerreviewed journal article. Just a collection of perspectives gathered in the last fewmonths during the CCG work towards authorisation, as well as a number ofobservations of PPE from the last few years in the NHS.It is set out so that you can skip sections, or read through. The first part is about theImpetus, and then where PPE is now and some of the issues. Sections 4 - 8 highlightsome specific areas related to, and part of PPE, Section 9 sets out things to considergoing forward, and section 10 reflects on what makes PPE effective. Section 11 and 12raise governance and ethics specifically. Section 13 through to section 16 offerwebsites, tools resources, models, and references. Appendix 1 suggests somediagnostic questions to ask/use to support the CCG towards authorisation, andAppendix 2 outlines the new Patient Experience Framework.2. The Impetus - why bother with PPE?If we look at the impetus of PPE in relation to outcomes, the Public Health OutcomesFramework (2012) concentrates on two high level outcomes to be achieved across thepublic health system:• increased healthy life expectancy - not only how long people live but how well they life at all stages of life• reduced differences in life expectancy and health life expectancy between communities- reducing health inequalities between people, communities and areas.The Public Health Outcomes Framework state ‘using a measure of both life expectancyand health life expectancy will enable the use of the most reliable information availableto understand the nature of health inequalities both within areas and between areas’.These outcomes can only be achieved through working together with patients, thepublic, carers, and all of those involved in the delivery of healthcare.Across much of the world participation is on the rise. In many economically developedcountries, there is citizen participation on various levels - from involvement in decisionmaking in individual episodes of care to public participation in policy-making processesand this is now formally mandated by policy. ‘Participation is seen as a means of bothHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • reconnecting disengaged publics with the decision-making process in an era of‘democratic deficit’ (Pratchett 1999), and improving the quality of those decisions bytaking account of a greater breadth of views, and creating greater understanding of theneeds and wishes of the recipients of public services. ‘ (Martin 2009)The current NHS policy context includes: the NHS Outcomes Framework; the NHScommissioning Framework; Information Strategy and choice consultation; HealthyLives, Healthy People, the NHS Constitution, Section 242 - the Statutory duty toinvolve, Liberating the NHS - the White Paper and legislative framework ‘nothing aboutme without me’. The NHS Act 2006 places a statutory duty on all NHS organisations toinvolve patients and their representatives in decisions about services. Under the HealthBill’s proposals, all new commissioners are expected to have an approach toengagement in place before achieving authorisation by the NHS Commissioning Board.The NHS Constitution (‘The NHS belongs to us all’) sets out seven key principles thatguide the NHS in all it does:• The NHS provides a comprehensive service, available to all.• Access to NHS services is based on clinical need, not an individual’s ability to pay.• The NHS aspires to the highest standards of excellence and professionalism in the provision of high-quality care that is safe, effective and focused on the patient experience.• NHS services must reflect the needs and preferences of patients, their families and their carers.• The NHS works across organisational boundaries and in partnership with other organisations in the interest of patients, local communities and the wider population.• The NHS is committed to providing best value for taxpayers’ money and the most cost- effective, fair and sustainable use of finite resources.• The NHS is accountable to the public, communities and patients that it serves.The NHS Constitution also states that good governance is important:• to patients because they depend on the quality of the judgements that CCGs make;• to the public as it will give them confidence that the best decisions are taken for the right reasons, that the quality of healthcare services is protected and that public money is being spent wisely; and• to clinicians because it supports them to make the best possible decisions, reduces the likelihood of things going wrong and protects them in the event that things do go wrong.and, that good governance means focusing on the organisation’s purpose and onoutcomes for citizens and service users:• Being clear about purpose and intended outcomes for citizens and service users• Making sure that patients receive a high quality service• Making sure that taxpayers receive value for moneyThe constitutions that CCGs develop are asked to:• Identify how the CCG will involve patients and the public in their commissioning decisions;• Identify how the CCG will ensure the full range of health and care professionals as well as patients and their representatives are involved in the design of services;• Identify how the CCG, working with the Local Authority, will promote partnership working and play a full part as a member of the Health and Wellbeing Boards;Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • Shape the culture, behaviours and relationships in their area, and put in place proposed structures and systems to safeguard transparency and good governance;Why is transparency important for public accountability? CCGs not only need goodgovernance to ensure that they are making decisions in the right way to secure the bestpossible services for the local community, they must also ensure everything is done inan open and transparent way in order to demonstrate to all those to whom theyaccount, and in particular the public, that this is the case.The NHS Future Forum emphasised these points in its report on patient involvementand public accountability:“In a democratic country, with taxpayer funded public services, public accountability isvital to secure quality, integrity, value for money and public confidence. There has to begood governance at every level of the system, in every organisation dealing withtaxpayers’ money, and amongst those individuals accountable within thoseorganisations.”As statutory NHS bodies, CCGs will be required to promote transparency at all timesby:• ensuring early engagement on proposed commissioning plans with patients and the public, Health and Wellbeing Boards, current and potential providers and clinical networks;• setting out clearly in the CCG’s constitution the way in which decisions will be made;• holding governing body meetings in public (except where this would not be in the public interest), holding a public meeting to present the annual report and considering whether they wish to hold any other meetings in public;It is increasingly mentioned in policy papers, and articles that creating a responsibleand accountable CCG with good governance will lead to good management, goodperformance, good stewardship of public money, good public engagement and ourultimate goal - good outcomes for patients (NHS Commissioning Board papers 2012).‘Too often people who use public services are viewed as individuals with a set ofproblems that need to be solved. This perspective means that public services haveoften found it impossible to build and sustain the social networks of people who usethese services.’ In Morris & Gilchrist’s (2011) early recommendations ‘commissioners ofpublic services for example GP consortia/local authorities in charge of public healthspending should specify social network related outcomes as well as more servicespecific outcomes. Morris & Gilchrist also cite that ‘commissioners should ensure thatpublic services do not damage the networks of service users or reinforce isolation orloneliness. Instead public services should help to sustain and grow these networks’.And, ‘commissioners of public services should protect and utilise the positive assetsthat currently exist... not just buildings, but also assets of associations’. ‘Clinicalcommissioning groups will need to look beyond their practice lists in order to engagewhole populations’ (NHS Confederation 2011)’The RCGP (2011) cites the business case for PPI - ‘users of the service and their carersare most likely to identify safety failings in services and systems.’ (RCGP 2011:3)and that:Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • ‘CCGs will on occasions find themselves faced with difficult decisions around decommissioning specific services. By adopting an approach that involves patients and the public from the outset, is more likely to lead to an acceptable outcome, with the reasons for the decision both recognise and understood’ RCGP 2011:3)and,• ‘patient involvement is crucial in fully understanding the best way to redesign pathways of care which meet the needs of patients... involving users in redesigning services will help to ensure a more effective outcome... ...seeing these experiences in the patients shoes’(RCGP 2011:3)Furthermore:• ‘First, patients must be at the heart of everything that we do, not just as beneficiaries of care, but as participants in its design. We must see the NHS through their eyes - their experience, their outcomes - and make delivering what they want a shared experience and responsibility’ Andrew Lansley (NHS Institute for Innovation & Improvement 2011)• ‘the public voice can help secure improved outcomes’ (NHS Institute for Innovation and Improvement 2011)• ‘CCGs will have to account to the patients and population they serve as well as being accountable to the NHS Commissioning Board. This will require a comprehensive and effective patient and public engagement strategy with systems and processes to assure the governing body that this is taking place throughout the organisation. They will need to play a full role on their local Health and Wellbeing Boards including co- operating, in preparing joint strategic needs assessments, and agreeing a joint Health and Wellbeing Strategy.’ (NHS Commissioning Board 2012)To understand the ‘why bother’ we need to understand the potential outcomes of PPE -the ‘what happens if we develop and enable PPE?’ The outcomes of PPE are oftencited as - ‘effective PPE can lead to more patient-centred care, a greater sense ofownership among patients and moderated demand for healthcare resources.’ (NHSConfederation 2011), and, ‘I can think of no decision that has not been enriched andimproved by patient engagement.’ (Homa 2011) ‘In Nottingham we are dedicated tocreating more opportunities for patients and carers to both fulfill a more active role intheir own care and also to share with us their ideas as to how we can improve ourservices.’ Benefits often cited for having effective PPE include improved healthcare,better informed access to care, clarity of understanding of rights and responsibilities,ability to influence service delivery and future service provision, and ability to influencecommissioning decisions. ‘There is clear evidence that PPI can make real, constructivechanges to the provision of services, aiding the responsiveness of practices andproviding services that truly reflect what patients want and need. PPI also plays a keyrole in encouraging healthier communities, through the provision of information, adviceand support to help local people lead healthier lives.’ (BMA 2011).The quotes from policy papers are endless in their support to commit to and developPPE to form a regular and systematic way of working in and around the NHS. But howmuch of this is rhetoric? What is the reality? Jeremy Taylor (National Voices, 2012) citeshow often, PPE is mentioned in policy documents for example ‘we will put patients atthe heart of the NHS, through an information revolution and greater choice and control’,and, ‘shared decision making will become the norm’, and, ‘no decision about mewithout me’. He also states ‘These words early on in the white paper ‘equity andHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • excellence’ under the heading ‘putting patients and public first’ simultaneously sum upthe White Paper’s fine intentions and muddled thinking about patients’. We know thatPatient Organisations and patients themselves welcome the rhetoric, but are aware thatsuch promises have been made before and that there is a continuing gap between thewords and policy statements, and the reality.Where is the patient, and public perspective on the ‘why bother’? why does it matter tothem? ‘Ask any user of services what matters to them and they will have anopinion’ (Gilbert Inhealth 2011) What are the things that matter to patients and carers?‘getting better, feeling better (outcomes of care), getting the right care from the rightpeople (clinical quality), being treated as a human being (humanity of care), information,having a say (shared decision making), being supported, support for carers, relatives,safe clean comfortable environment (environment of care) (Gilbert Inhealth 2011) - thisincludes the way care takes place e.g. ‘not being passed from pillar to post (continuity).In addition:• ‘the aspects of care correlating most closely with good patient experience are relational. Patients want to be listened to, to get good explanations from professionals, to have their questions answered, to share in decisions, and to be treated with empathy and compassion’ (National Voices 2011)• ‘The quality of care is a factor of the quality of the interactions between people who use services and people who provide them. thus, transforming this dynamic is a lever for improving quality’ (Health Foundation 2011(3)• ‘people understand there are resource limitations, and indeed are often self-limiting in the use they make of services and professionals’ time. But they want to know clearly what their entitlements are (not just to care but to support and finance) and what costs they might incur, at any key point on their journey’ (National Voices 2011)• ‘the essence of sustainable and meaningful transformation is the preparedness to seek to see what patients, carers and staff see and experience every day’...‘some of our most revealing and refreshing insights have also come from when our staff put themselves in the position of patients and begin to truly appreciate what it feels like’ (Homa 2011)• ‘at a recent NHS Confederation roundtable on engagement, participants said significant commitment to and enthusiasm for it already existed within many CCGs’ (Stout 2011).What of the benefits for doctors? For doctors PPE potentially offers a ‘greaterunderstanding of what their patients want so they can focus on what matters, and onimproved reputation through recognition that patients have a positive experience, beingthe patients choice for care, delivering NHS values, enabling public accountability, andalso for the efficient use of resources’ (BMA June 2011). There are also benefits for theNHS which include ‘strengthening public confidence in the NHS, and to society, whenpeople are involved in and can influence decisions which directly affect their lives, theirself esteem and self confidence increases, this in turn improves health and well being’.(BMA June 2011). CCGs are ‘dependent on the unique role of general practice inconnecting and acting as the intermediary for all the care patients receive. Generalpractice connects patients with specialists, and it connects patients, carers, and theirfamilies with the broad range of support they need from both within the NHS and socialcare, most importantly, as trusted local community leaders, general practitioners havethe ability to give a voice to the population of patients and communities they serve (DH2011). The GP Patient Survey states that 88 per cent of their patients rate their overallHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • experience with their GP practice as good; 93% of patients have confidence and trustin the last GP they saw. DH (2011)3. Where is PPE now?In order to move forward we need to understand where we are, what we have learnt,and what then might be the next steps.There is in many parts of the NHS, and in CCGs, already a baseline or foundation ofPPE whether through PALS, untoward incidents and complaints reporting, patientparticipation groups, surveys, local patient groups, the use of technology such askiosks, and the internet, a mass of fliers, information packs, and a range of educationalprogrammes including those building self management. In many cases there is alsoevidence and good practice of engagement through service reviews, serviceimprovement, and service disinvestment.Since PPE became a much needed addition to the management toolkit in the NHS(perhaps around 10 years ago) there is now a proliferation of PPE tools, ideas,approaches, papers, processes, and techniques on offer, many of which have beentried and tested, and the learning has been used to improve the way PPE is undertakenin and around the NHS. There is still evidence in places of ‘tick box’ approaches, andpaying ‘lip service’ to developing real relationships, and true engagement. At the otherend of the spectrum, there are also some examples where patient empowerment,patient led innovation, ‘patients as leaders’ (Gilbert Inhealth 2011) and more creative,and deeper relational and cultural changes have been made. Further on in this papersome of these practices and case studies are shared and discussed. There are also avast amount of guidance, papers, many now CCG related, rife with ‘how to guides’ and‘best practice’, and almost a cottage industry of organisations, consultancies,educational establishments, and think tanks producing papers, ideals, and principlesabout PPE. There is certainly no lack of ideas, ‘best practice’ tools, techniques,ladders, diagrams, and places to go to seek guidance, or contacts. The NHS is alsogreat at ‘wordsmithing’ and there is no lack of words written into policies, onorganisational websites etc about PPE. The NHS more broadly, and locally has over theyears implemented many PPE infrastructures, processes, approaches and policies, andsome of these are already active processes continuing to be used, or being developedby CCGs. There is a legacy and some PPE ‘assets’ to build upon, as well as thepassion and commitment for PPE by some too. So why if we have this proliferation ofresource have we not simply taken EPP practice into CCGs, or that PPE is NHS the‘normal’ way the NHS does business? and why do we still have tick box or a paucity oftrue practice in some areas? There are a number of reasons, some of which arediscussed below.a. New context old legacies - particularly in economic termsPPE really got started in the NHS in times of plenty, budgets, funds for servicedevelopments, and enabling patient choice came within a policy and economic time ofplenty of resources. Given we are now in a climate fewer resources, and needing to do‘more with less’ so the way we engage not just with patients and the public, but withour all our ‘stakeholders’ and staff, service delivery teams, GP practices, needs arefresh. It needs a new clarity of expectations for all concerned based on what isHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • possible given the climate and context now. It needs a re-imprinting recognising theold momentums of resource rich that are still at play, even down to the language we usein PPE, or in the way we describe services and what is actually on offer/possible. Wealso know that there just isn’t enough resource or funding to go around the whole of ourpopulation, particularly if the health and wellbeing of the population gets worse anddemand increases. ‘in the next five years demand for healthcare will increase by around20% mainly for long term conditions, yet over the same period resources will increaseby only around 1%’ (Goodwin 2012), and people aged 65+ will account for 23% of thepopulation. ‘Addressing this context has to mean a dramatic drop in demand forhospital emergency care and better managed primary and self-care’ (Goodwin 2012),The NHS will need to ‘develop significantly better outcomes for the same resource‘whilst pursuing innovative change across health, social care, including private and thirdsectors, and balance finance, quality and safety all at once ‘more management lessleadership’ (Goodwin 2012). Some of the PPE will be about disinvestment, as well assupporting self care and self management.b. Clarity around the levels of PPE - collective and individual‘Patients and public are two different categories but often lumped together - I can touchand feel patients but the public is an intellectual abstraction’ (Jeremy Taylor, 2012). ‘Theliterature on patient involvement in health care distinguishes between participation inpolicy, service planning and evaluation on the one hand, and individual-levelparticipation in personal healthcare on the other’ (Sinding et al 2011). In the day to daybusiness of any CCG, there will be PPE on both collective and individual levels. In GPpractices there will be the continuous opportunity for realtime feedback which cansupport increased responsiveness, and support quality and an ongoing momentum inservice improvement. It also demonstrates commitment to service user satisfaction andpublic opinion. Patient involvement at a care practice level can carry many promises; itis a key to ‘getting the best health care’ and, it assures the patient an easier passagethrough care, and more effective communication with health professionals and informed(presumably better treatment choices). In the overall business of the CCG, in itscommissioning and planning cycles, and, in resource allocation, as well as thedevelopment of new services, and the disinvestment of services, as well as the way theCCG ‘runs’, there is an ongoing need for PPE embedded into the CCG systems, andways of working, rather than as an add on or tick box aspect to the business of theCCG. This includes the governance (mentioned below) aspect of running a CCG, aswell as clinical audit. While it may seem obvious there are many different processesand tools that support PPE individually and collectively, and it is an important reminderas to the scale, purpose and focus of PPE as obviously different tools or approachesmay be needed for collective, or individual engagement and relationships. Whilst manyCCGs, and certainly GP practices have good practice, and pockets of PPE that workswell, it is often not systematic, or consistent across the CCG.c. The language and meanings - of PPEOne of the most common things that seems to get in the way of PPE is aroundlanguage and meanings - the actual language, jargon and words used for PPE, and themeanings or mixed meanings behind PPE and the many variations in language andexpression about what PPE is. This paper has been written using PPE as the consistentlanguage, although as yet it has not clarified what PPE actually is.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • ‘There are tensions both in the ideas of participation held by policymakers, and in theways in which participation is realized by members of the public and state officials,managers and professionals which arise from different, even conflicting ideas about thepurpose of participation, the nature of ‘expert’ and ‘lay’ knowledge and therelationships between professional providers of services and the public they serve(Martin 2009). ‘The anticipation of active citizens, self-governing communities orreflexive public participants in policy does not necessarily precipitate the emergency ofsuch beings in practice’ (Martin 2009). ‘Power differentials between public participantsand those within public-service organisations responsible for engaging with them meanthat the terms of reference of participation become rather constrained’ (Martin 2009). Itis not just related to the meanings of participation, or engagement, but around allaspects from notions of communication, information, involvement, collective, orindividually, to the many acronyms that are used such as PPE, PPI, EPP, PLI and themany ‘co’s that are used to prefix many words such as co-production, co-development,co-design, co-creation, co-operation, to the extent that ‘co’ has become the new‘black’, the new fashionable term for the season so to speak. When we stick the prefix‘co’ onto something what does that actually mean, or does it engender a truer way ofengaging or empowering those we are building relationships with? Was it ever thus?the NHS has a way of using new jargon, new terminology, new language for everypolicy change, and, whilst many can be heard to whisper the new terms, or use the keywords for the current context, there is often a lack of shared understanding of thoseterms whether they be ‘modernisation’, or service improvement, or service quality, oreven balancing the books, or patient safety. Too often assumptions creep in aboutwhat we are all talking about, and a muddle then occurs. ‘The slow escalation ofinvolvement is in part because of the myriad ways in which it is conceptualised anddiscussed. Thus we conclude that one of the greatest barriers to truly integratingpatient involvement into health services policy and research is the conceptual muddlewith which involvement is articulated, understood and actioned e.g. its relevance toclinical practice, clinicians need to be supported to seek clarity in the use andoperationalisation of involvement if the agenda is to be truly adopted and strengthened(Forbat, Hubbard, Kearney 2008).We use the terms communicating, informing, involving, engaging, participating,empowering, leading interchangeably. ‘A range of ways of conceptualising involvementare used interchangeably within policy and practice without due recognition of the verydifferent meanings and implications of public consultation, patient involvement intreatment decision-making and patient /carer involvement in service design anddevelopment (Forbat, Hubbard & Kearney 1999). ‘Wooly and imprecise languagecreates three kinds of risk. The first is the risk of false consensus, people think they areagreeing, when in fact they mean different things by the same worlds... the second isconfusion... e.g. what exactly is putting patients first? the third is alienation, jargon likepatient empowerment or PPI’ (Jeremy Taylor 2012). Whilst this paper doesn’t begin tounpick all of this, and to create or offer true meaning, or true definitions of the termsand the language, in the next few paragraphs there are descriptions of some of thepotential meanings or terms.There is a ‘spectrum of behaviours on a continuum (NHS Institute for Innovation andImprovement) - from informing (e.g. patients knowing what services are available andHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • where to access); feedback (e.g. experience measures collected, analysed andimprovements made as a result, and this insight is used in designing and assessingservices); engagement (e.g. engagement in commissioning decisions, procurement,consultation as well as shared decision making whereby patients and carers aresupported to engage in their own health care); co-design (e.g. effectively involvingpatients/family/public in redesigning care processes as equal and active partners);partnership (e.g. people actually contributing alongside professionals such as citizen ledservices).Engagement can be described as: ‘patient and public engagement is the activeparticipation of patients, carers, community representatives, community groups and thepublic in how services are planned, delivered and evaluated. it is broader and deeperthan traditional consultation. It involves the ongoing process of developing andsustaining constructive relationships, building strong, active partnerships and holding ameaningful dialogue with stakeholders’ (NHS Institute for Innovation and Improvement).Patient-led can be described as ‘to move from a service that does things to and for itspatients to one which is patient-led where the service works with patients to supportthem with their health needs’ (Department of Health 2005)PLI (patient led innovation) can be described as it involving the ‘innovating of existingproducts and services to meet the needs of patients and carers, by engaging withpatients throughout an innovation-led design process’ (cpd4healthinnovation, School ofHealthcare, Faculty of medicine and healthcare, Leeds University).‘Patient satisfaction is the simplest interpretation and application of involvement andimplies no action on the part of services to adjust practice, nor any indication ofpartnership or collaboration between patient and professional. ‘Forbat, Hubbard &Kearney 1999Involvement can include - ‘where involvement is constructed as part of day-to-daypractice, the model of patient as partner is invoked, with experiential knowledge as adriver - ‘the notion that involvement should be embedded into all practitioners’ roles is acore message in policy. however this is predicated on an understanding of whatinvolvement is’ (Forbat, Hubbard & Kearney 1999).Consumer engagement could be described as - ‘Consumer engagement at anindividual level - patient carer involvement in decision making about their own care andtreatment, or involvement in care practice, and includes patient centred care’ (TereDawson, www.healthissuescentre.org.au).Co-production ‘is about individuals, communities and organisations having the skills,knowledge and ability to work together, create opportunities an solve problems. Thecentral idea in co-production is that people who use services are hidden resources, notdrains on the system, and that no service that ignores this resource can beefficient’ (RCGP 2011:9). Elke Loffler (Box 2 page 5) describes ‘distinctive principles ofco-production• co-production conceives of service users as active asset-holders than passive consumersHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • co-production promotes collaborative rather than paternalistic relationships between staff and service users• co-production puts the focus on the delivery of outcomes rather than just ‘services’• co-production may be substitutive (replacing local government inputs and inputs from users/communities) or additive (adding more user community inputs to professional inputs or introducing professional support to previous individual self-help or community self-organising)• ‘there is a lot of evidence which suggests that the term co-production’ should be substituted by terms which are already being used in local government and which local government finds it more natural to use’Citizenship - ‘confers not only rights but also responsibilities for us to all be activecitizens, taking care of our health, minimising unnecessary demands on theNHS’(Jeremy Taylor 2012).Patients as partners - ‘shared decision making - shared means equal, equalising thepower imbalance, doing medicine in a different way’ (Jeremy Taylor 2012)’Shared decision making - ‘shared decision making - improving outcomes by changingrelationships ‘about the relationship between clinicians and patients and changing theconsultation experience so that both parties share knowledge, and expertise as equalpartners and reach informed decisions about care and treatment, including the choiceto manage their health themselves through self-management’ it requires a radicalredesign of health care services, and changes to cultural perceptions of the public andretraining of clinicians’ (Health Foundation 2011). ‘Shared decision making is a processin which clinicians and patients work together to select tests, treatments, managementor support packages, based on clinical evidence and the patients informed preferences.It involves the provision of evidence-based information about options, outcomes anduncertainties together with decision support counseling and a system for recording andimplementing patients’ informed preferences.’ (Coulter and Collins 2011)Patients as leaders - ‘The Centre for Patient Leadership will provide patients with theknowledge, skills and behaviours to become true agents of change. It will enablepatients and carers to become effective and influential leaders in improving quality andp ro m o t i n g h e a l t h ’ ( I n h e a l t h , D a v i d G i l b e r t a n d c o l l e a g u e s - h t t p : / /www.inhealthassociates.co.uk/index.php/centre-patient-leadership/ )People-powered public services - NESTA (2009) - genuinely empowering patients andclinicians to unleash innovative and cost effective ways of doing things, which takesadvantage of the ingenuity and strength of existing communities... with innovationgiving genuine power to front line staff, patients and the public....patient-centredredesign and prevention - properly understanding people’s needs helps design betterservices. - taking more account of the users of services, evaluating and redesigningservices based on the input and participation of users, working closely with frontlinestaff.4. It’s all about people & relationshipsWhatever meaning, or language is used, there is a common denominator for instancewith PPE, co-production, shared decision making, patients as partners, people policy processesHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • 33% 33% 33%communications, stakeholders and stakeholder development, clinical and workforceengagement, organisational culture, values and behaviours, leadership, governance, -the common connection is relationships amongst people. Many organisationsparticularly when going through large scale change overly focus on policy (or structure),and processes, rather equally focusing on people, processes/relationships and policy inequal amounts (Fig 1 below) Policy can support the impetus for instance for PPE,processes can enable PPE to take place, people and relationships are the nub of it all.Making it about people is the bottom line, without the relationships or the behaviouralaspect nothing actually gets done, or the quality by which it is undertaken is away fromthe purpose, particularly given the NHS, and CCGs are service organisations. Serviceorganisations, e.g. those in the public sector invest in consumer relationships, incustomer service, and in people, those who work for them, and those they work for/serve.Fig 1Its about making it people focused, and when people work together, or require servicesfrom one another, it is about relationships. People and relationship focusedorganisations. We spend very little time developing metrics, outputs, or even outcomesbased on the development of people and the development and quality of relationships.Even the inputs for building relationships, and working with people can be mechanisticand not people focused. If we put metrics, or markers, or standards, or outputs/outcomes based on the quality of relationships that may help to support a shift in theemphasis placed on relationships or relationally based ways of operating.5. Its not just about Patients and the PublicThe NHS Constitution pledges to staff (section 3a staff - your rights and responsibilties)‘to engage staff in decisions that affect them and the services they provide, individually,through representative organisations and through local partnership workingarrangements. All staff will be empowered to put forward ways to deliver better andsafer services for patients and their families’ and ‘to provide support and opportunitiesfor staff to maintain their health, well-being and safety’. Staff engagement meansdifferent things to different people at different times in different places. Engaging all whowork in the CCG will form part of the way forward for CCG’s. ‘A great CCG will havesignificant engagement from its constituent practices as well as wide spreadinvolvement of all other clinical colleagues, clinicians providing health services locallyincluding secondary care, community and mental health, those providing services topeople with learning disabilities, public health experts as well as social care colleagues.it will communicate a clear vision of the improvements it is seeking to make in thehealth of the locality including population health’. If a ‘clinical perspective in everythingthe CCG does, with quality at its heart and an outcomes focus are part of CCGauthorisation (Domain 1:a strong clinical and multi-professional focus which brings realadded value) CCG’s will have a ‘responsibility to ensure that relevant health and careprofessionals are involved in the design of services and that patients and the public areactively involved in the commissioning arrangements’ (NHS Commissioning Board2012). But recognising historically (this may not be the case now) that ‘getting GPsengaged in quality improvement can be a challenge, they may not respond well toHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • improvement models or management consultancy-style improvements, and, peer topeer approaches are a good way to engage GPs and allow learning to spread out to awider range of people.’ (Tongue 2011)More generally, in terms of engaging everyone who works within the CCG there is atrack record of staff engagement in the NHS, although variable in differentorganisations. GP practices have the benefit of often being small practices where moststaff see each other regularly and informally they can feel part of the team, and well-informed. ‘NHS Annual staff surveys have shown that relatively few staff in the NHS feelthey are involved in important decisions, consulted about changes that affect them,encouraged to suggest ideas for improving services, or feel their organisation valuestheir work’ (Mooney 2011). The CIPD in its survey (2011-12) of all sectors and staffengagement found that 50% of respondents feel fully or fairly well informed about whatis happening within their organisations but that satisfaction with the opportunity to feedupwards remains fairly negative’. In addition when looking at whether managers consultemployees about important decisions ‘this is very low (-31%), the degree to whichemployees think managers consult with them has fallen to another record low’.Research shows that where staff engagement scores are high, scores are significantlyhigher for patient satisfaction and lower for standardised hospital mortality rates.Research also shows that where staff engagement scores are high, scores are alsosignificantly higher for (good) staff health and well-being and lower for staffabsenteeism. It is worth the effort in engaging all staff. High levels of staff engagementcan lead to increased financial efficiencies as a result of a number of factors’ (NHSEmployers) and, ‘in organisations that respect staff as an asset there is much moredialogue and transparency, and bad behaviours - whether by managers or staff - do notgo unchallenged’ (Stevens 2012), ‘engagement creates a mutually beneficial long-termrelationship between employees and employers. it is more enduring than satisfactionbecause it represents an emotional connection with the organisation that is likely to lastthrough difficult times as well as good (Savitt 2011).‘For organisations hoping to raise employee engagement the obvious starting point is tomeasure existing levels of engagement, and to do that they need to know what they aremeasuring and despite all the talk of engagement there is little agreement about whatthe term (employee engagement) actually means’. ‘It’s about attitudes and behaviourand relationships at work and positiveness and how you get that, and it happens to becalled employee engagement at the moment’ (Purcell in Arkin 2011). At first instead oftrying to get employees to support organisational goals and values it could make moresense for employers to focus first on making sure employees are engaged with their(daily) work’, ‘and having managers who facilitate and empower rather than control orrestrict staff’ (Truss in Arkin 2011). ‘Clinicians need to be equipped and motivated tosupport people to use information and share in decision making about their health andhealthcare choices, this is not just about adding a new set of clinical skills to thecurricula, but about a fundamental change in what it means to be a healthprofessional’ (Health Foundation 2011:5). An engaged member of the team (whether aGP, or practice nurse, or practice manager for instance) will be better placed to engagewith those they serve (patients, carers, the public), as they will already have anengaging relationship with their practice or organisation, and understand what it feelslike to be engaged.6. Other stakeholders and relationshipsHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • As well as engaging with patients, the public, carers, and the workforce, there are manyother stakeholder and partnership relationships that CCGs and GP practices areengaging with, and developing new, or refreshing old relationships, all of whom providepotential support, and collaboration in the work of the CCG such as the Health andWellbeing boards and local Healthwatch. Local authorities can offer; a democratic inputand involvement, long-term investment in combating the social and economicdeterminants of health, extensive experience of commissioning a range of health relatedprogrammes, expertise in processes of consultation and engagement. Local police, fire,educational services will also have a lot of local experience in engaging the public. TheThird sector e.g. relevant special interest groups, and voluntary organisations andcharitable groups, will also have local networks, and, most local areas have an umbrellaorganisation that is in touch with the majority of local third sector groups and offers asimple way into collaborative arrangements. GP practices will already have a lot ofexisting arrangements and relationships that they can refresh and build on.7. InformationIt is worth mentioning information as this in itself has many factors to consider inrelation to engaging patients and the public, as well as the potential to inform,education, and enable shared decision making. From an organisational perspective,there is no lack of producing mountains of information leaflets, fliers, websites etc. and,whilst there is some evidence leaflets and letters for instance can improve peoplesknowledge and help them feel more confident there is sparse evidence that verbal orwritten information alone have a significant impact on shared decision making, so arange of information sources are useful.Some other potential problems with using information to inform or engage are outlinedbelow, many of which are from a useful publication by Ellins & McIver 2009:• ‘There is a wealth of information available in the form of information leaflets, decision aids and on-line information, however without the support and encouragement to use this information the potential benefit will be limited’ (Health Foundation 2011)• ‘Information is only as effective as the support that accompanies it, this means it is essential for clinicians to have the skills and aptitude to encourage patients to use information’.• ‘if patients and the public are going to be empowered to use information about quality of primary care then the content should be relevant and designed to suit different needs; the format must be accessible to people with different literacy levels; and different modes of dissemination should be provided to enable everyone to make use of the information’ (Ellins & McIver 2009)• ‘information materials are frequently designed with a ‘standard’ user in mind, but the public is not a uniform group’ (Ellins & Mciver 2009)• ‘different groups of people value different types of information but the literature suggests that the majority of patients will be interested in both technical and interpersonal aspects of care and they will want ‘stories’ and ‘data’ as well as contextual information about their local health service including staff.’ (Ellins & McIver 2009)• ‘information alone rarely changes behaviour once it has become a habit. An approach that encourages people to think about issues themselves and generate their ownHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • arguments for why it may be useful to change GP practice or choose to use health services differently would be more effective’ (Ellins & McIver 2009)• ‘the ability of patients to make informed decisions about their health and health care is critically dependent on information’ (Ellins &McIver 2009)• ‘Ellins & McIver (2009) suggest from review carried out by Marshall and colleagues that research demonstrated a number of reasons why health service users did not use information about the quality of health care, these were: • difficult in understanding the information • disinterest in the nature of the information available • lack of trust in the data • problems with timely access to the information • lack of choice • consumers rating anecdotal evidence from family and friends more highly than empirical evidence’• ‘generally evaluative studies report high levels of user satisfaction with online health information’ (Coulter and Ellins 2006)In going forward, ‘how can we (continue) to ensure information is available that enablespeople to take more control of their own care and enable shared decisionmaking?’ (Health Foundation 2011). ‘There should be a clear and agreed purpose forsharing information with people, and it must be part of a wider strategy to change thepatient/clinician relationship to enable people to take an active role in their owncare’ (Health foundation 2011:4). ‘Health professionals must be actively involved in thedevelopment of information systems and requirements in order for information tosupport improvements in care’ (Health Foundation 2011:5). Being actively involved inthe design of information solutions will encourage buy-in from the clinical and otherworkforce/teams working in the CCGs with support not only to measure and recorddata, also how to use information to improve quality, and improve relationships withpatients and the public.Equally, the way CCGs and GP practices deal with, collect, collate, analyse, synthesispatient generated information such as complaints is a vital resource, so information is atwo way thing, it is not just about informing patients and the public, but about themequally informing CCGs and GPs of their experiences and feedback.8. The Move Towards Self care/Self ManagementAs part of the overall Public Health Outcomes quoted at the beginning of this paper,and given that in the next five years ‘demand for healthcare will increase by around20% mainly for long-term conditions, yet over the same period resources will increaseby only 1%’ (Goodwin 2012), and given that people aged 65+ will account for 23% ofthe population ‘addressing this context has to mean a dramatic drop in demand forhospital emergency care and better managed primary-and self care’ (Goodwin 2012).‘There is a growing - though not yet universal - understanding of just how much healthcare depends on the co-operation of patients. As budgets rise in the future,preventative health care is going to rise in importance and that means a differentrelationship between patients and professionals (Burns, Boyle and Krogh 2002:2).Equally, ‘we know that people with long term conditions can improve their health andhave a better quality of life by taking a more active role in managing their owncondition’ (Health Foundation Snapshot Co Creating Health 2011). There is policyHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • support towards self management including ‘No decision about me with out me’ (NHSWhite Paper Equity and Excellence:liberating the NHS) which sets out that people withlong term conditions should be engaged in making shared decisions about their owncare.Why bother? ‘Shared decision making is viewed as an ethical imperative by theprofessional regulatory bodies which expect clinicians to work in partnership withpatients, informing and involving them whenever possible. It is important for patientsbecause they want to be more involved than they currently are in making decisionsabout their own heath and health care’(Coulter & Collins 2011). ‘International evidenceshows that involving people in their care and treatment improves their health outcomes,boosts their satisfaction with services received, and increases not just their knowledgeand understanding of their health status but also their adherence to a chosen healthtreatment. (NHS Institute for innovation and improvement 2011) ‘There is alsocompelling evidence that patents who are active participants in managing their healthand healthcare have better outcomes than patients who are passive recipients of care.Shared decision making also important for commissioners because it reducedunwarranted variation in clinical practice’.None of this can occur without making changes to the way healthcare is delivered,including enabling more information sharing and educational resources, andopportunities for learning self management for patients whether it is locally in GPpractices, or in other parts of the community such as larger establishments, hospitals,pharmacies, supermarkets. In addition there is evidence that more direct educationalsupport such as the Expert Patient Programme for patients, and opportunities forpatients to share their experiences and self management skills with one anothersupports and enables self management. Healthcare professionals may require supportfor a shift towards enabling self management, and a move away from the clinician asexpert:• ‘No programme for putting ‘patients at the heart’ can be complete with out a serious effort to beef up support for people to self manage and self care through better information, education, access to their health records, support, peer support, re- enablement, home adaptation, Telecare, Telehealth and help back into employment’ (Jeremy Taylor 2012)• ‘Information is needed to help people take more control of their care and encourage them to self manage and act as partners in deciding about their care.’ ‘different people will require varying approaches to help them take control of their health and manage their long term conditions’ (Health foundation 2011:8)• ‘Integrated care must deliver a new deal for people with long term conditions. This should include support for self management.(Redding 2011)• ‘By supporting clinicians to shift from being ‘experts who care for and do to’ to ‘enablers who advise and support’ we can increase people’s choice and control. Co- creating health helps people to move from being passive recipients of care to taking an active role in their health and care in collaboration with clinicians’ (Health foundation: snapshot co-creating health 2011)• ‘What patients and carers want to know about stroke is usually not the same as what health professionals think they should know’ The Stroke Association (National Voices 2011)• the consultation between patient and doctor could be organised around the achievement of a diagnosis, a transaction involving the transfer of knowledgeHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • (symptoms given to doctor by patient; diagnosis given to patient by doctor), another could be the development of a complex shared understanding; the creation of new knowledge for both participants, unique to the patient; doctor and patient exploring together what it means for that person individually in their life to have diabetes and to live with diabetes etc.• ‘co-evolution - how can we work out together what might work for our agreed priorities; coordination - what are our roles in getting this job done? negotiation - how can we optimise the outcome for each of us given our competing priorities?(p 11 the health foundation (3) ‘equally making the nature of the consultation explicit for patients - so patients can prepare’There has been some confusion about the relationships between shared decisionmaking self management support and personalised care planning. ‘We argue they aresimilar philosophies each requiring that clinicians recognise and respect the patientsrole in managing their own health. they also require advanced communication skills andthe use of a number of tools and techniques to support information sharing, riskcommunication and deliberation about options. Shared decision making is appropriatefor decisions about whether to: undergo a screening or diagnostic test, undergo amedical or surgical procedure, participant in a self management education programme,or psychological intervention, take medication, attempt al lifestyle change. ,which, at itsheart, is the recognition that clinicians and patients bring different but equally importantforms of expertise to the decision-making process’ (Coulter & Collins 2011). ‘Aujoulet,Hoor and Deccache (2006) found a number of consistent features associated with theconcept of empowerment. One of the most important was that there were twodimensions to the process. First, there was an inter-personal dimension whereempowerment was seen as a product of provider-patient interaction.’ (in Ellins & McIver2009) where during communication power was given to the patient,’ second there wasan ‘intra-personal dimension where empowerment was a process of personaltransformation. Power was created within someone or latent power was released fromwithin the self’ (Ellins & McIver 2009). Shared decision making ‘as a philosophy of carepositions patients as equal partners in planning, developing and assessing care tomake sure it is most appropriate for their needs’. It involves putting patients and theirfamilies at the heart of all decisions, drawing on them as assets and experts. It is a‘term used to describe all aspects of patient involvement in their own health and dare,including self management support, access to personal health records, personal healthbudgets, care planning and decision aids’ (Health foundation 2011:7)On a practical notewhat does it include?• ‘Self -management support can be viewed in two ways:as a portfolio of techniques and tools that help patients choose healthy behaviours; and a fundamental transformation of the patient-caregiver relationship in a collaborative partnership’• ‘giving patients control over their health records can enable patients to take more control of their health and manage their own care more effectively. however just 50 of the 6000 UK general practices with the necessary technology are offering patients the opportunity to access their medical record on line’ (Health foundation 2011:5)• ‘tools such as books, video and audiotapes, seminars, discussion support groups merely provide the structure for learning. The content of empowerment is the life experience of the person using the tools’ (Reste and Anderson 1995:142)Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • ‘providing leaflets or guidance for patients to help them plan what they want to cover during GP consultations such as top tips on how to get the best from our appointment... or ‘what do I want to discuss’... (Health Foundation 2011:12)• people want information relevant to their condition, e.g. to help them self manage and share decisions, information from their healthcare team on their own treatment/care, and information held in their health record (Health Foundation 2011:23) - ways to do this include telephone consultations with GPs, email exchanges, testing, online communication (e.g. Newham University Hospital NHS trust (Health Foundation 2011:24) uses web-based consultations as an alternative to routine follow up outpatient appointments for people with diabetes - online consultations can be used where physical examination is not required, group education and Telecare - all increase convenience, improve access and potentially reduce costs, and whilst these technologies and approaches have been tested widely they tend not to be mainstreamed throughout the NHS.• There is a need to promote approaches and technologies so they be come mainstream, part of the culture for patients and clinicians, provide access to a number of approaches so they are normalised, and help clinicians develop skills needed to support patient use of information that is personalised to the individual• ‘walking out of a consultation with a ‘contract’ rather than a prescription. We have found that people are more likely to take action when they have made a commitment rather than when they have been prescribed action by others.’ Health foundation 2011:12• ‘self management works’ (Health Foundation May 2011) - a review of more than 550 pieces of high quality research suggests that it is worthwhile to support self management, in particularly through focusing on behaviour change and supporting self efficacy....‘self management is not a panacea, and is likely to work best when implemented as part of wider initiatives to improve care through educating practitioners, applying best evidence, and using technology, decision aids and community partnerships effectively’.• A wide range of initiatives that support self management categorised along a continuum e.g. passive information provision about health behaviours to technical topics, and initiatives that more actively seek to support behaviour change and increase self-efficacy at the other end. different clinical conditions may require different approaches, some require more technical or clinical education than others, some more behavioural.The Co-Creating Health Programme with the Health Foundation has many case studieson line. They used three development and improvement programmes across the sitesthey worked with which included ADP - advanced development programme forclinicians; helping clinicians to develop the knowledge and skills to support people toself manage effectively, SMP - self management programme for people with long termconditions to support people to develop the knowledge and skills they need to managetheir own condition and work in effective partnership with their clinicians, and SIPservice improvement programme supporting people with long term conditions andhealthcare professionals to work together to identify and implement new approaches tohealth service delivery that will enable people to take a more active role in their ownhealth.9. Things to consider going forward/setting conditions, building on assetsHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Where do we start? ‘People can get mesmerised by the whizzy events, or technologyetc, but its the day to day behavioural, cultural, and systems stuff that sustains, itsabout changing the way we relate to each other, and to those we serve’ (Gilbert Inhealth2011). Any relational, behavioural, engaging or partnership and stakeholder activitiesrequire organisations and teams to ‘Set the right conditions’ to enable it to happen,more so than just a ‘tick box’ exercise. It starts at the top (e.g. the culture of the topteam, and the way the organisation, or GP practice is run, the principles upon whichthey are founded, and the daily operating principles which everyone works towards, it isabout the way we do things, not the things we do, and for CCTs it is towardsauthorisation and beyond and not purely box ticking (NHS does that very well!). ManyCCG’s and GP practices will already have much practice to build on, many examples,case studies, tools, and techniques that have been used in engaging and involvingpatients, the public, the staff/clinicians, and partners and stakeholders. It is useful toregularly ‘stock take’ on what works, what doesn’t work, what is being learnt aboutengaging and involving, self management, shared decision making, information etc, andwhich processes in the GP practice, or CCG support engagement, and which hinderengagement. Sometimes organisational processes and systems are counter intuitive toengaging. Additionally it is about reviewing what has been written, and what is actuallybeing practiced/done as we can often have a gap of integrity where what is written isrhetoric and not actually acted out in reality even if it is perceived to be. One of theproblems with this is that often organisations haven’t agreed a set of simple behavioural‘markers’ or standards that means they will ‘know’ what engagement, or shareddecision making, or self management practices, or informative ways of working actuallylook like in the daily work of their teams. When taking stock it is also key to be honest,and look at what is working, and what has been learnt about it, validating this withfeedback loops with those engaged, e.g. ask patients, the public, clinicians or staffwhat their experience has been, and why things have or have not worked in a certainway.Take the time (together - with patients, public, staff, your team, your clinicians/colleagues, managers to reflect upon:• What is working well, and why? what is not working well and why?• What methods and techniques of engagement do the patients and public respond to and why?• How do we know what is working well and why?• which things are simple, and effective?• where can we build from PPE tools or approaches that are already working well? where do we have great case studies and examples?• what can we learn from other organisations?• How much value add are current or potential meetings, committees etc• how much value add are PPE processes, mechanisms? how do we know if they are making a difference?• what are meetings for e.g. to get work done and build relationships? or something else?• what do you do well, and build on that and build on the work that others do well e.g. health watch, and realise you all have a contribution to make, you don’t need to do it all yourself Healthwatch or other local voluntary organisations for example can help you (as a CCG or GP practice).• Does the CCG work in away that it has a PPE ‘lead’ and that’s where responsibility lies? or is PPE (or relationships) EVERYONE’s business? Too often once there is aHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • PPE lead every aspect of PPE is laid at their doorstep and this doesn’t build systematic, consistent PPE processes that are embedded across the practice or organisation.• What is the current health check of our own CCG or GP practice relationships with everyone in & around your organisation? if you are not embodying a relational way of working yourselves with each other, then, how can you build trust with those you relate with? how can we inspire all around you that relationships, engaging, informing etc matter?• How consistent, coherent, congruent, and embedded is PPE? - are data systems consistent, compatible? is there a consistent relational, engaging organisational or team culture, and policies? Do all of your workplace policies and processes such as induction, job descriptions, inter-professional relationships, CPD (continuous professional development), decision support technology have an engaging aspect? do they include how key it is for all who work in the organisation to understand and build relationships, and engage with one another, as well as patients and the public?• Does your organisation/team/practice have old legacies, old ways of behaviour that are outmoded? how can you support breaking old legacies at the same time as recognising real constraints (e.g. resource, time, practical, accessibility, physical constraints)• Are there inconsistencies? how do you spot inconsistencies for example in expectations, language, approaches?• Reality check, what is needed to get real in conversations with patients, the public, and each other? how can we develop a consistent willingness to engage, with clear and consistent feedback loops, not tentative, and how do we handle amongst ourselves, and with patients and the public ‘difficult discussions’, so there is transparency and, no more elephants in the room?In getting started with PPE, refreshing your PPE approaches, or building new ones,there is a need to consider what you are trying to achieve, and why from the staff, orclinician, or managers perspectives, as this will enable participation or motivation to doPPE. For example the use of different questions, approaches, interests andperspectives may be required as not every member of staff will have the same level ofinterest or need, particularly around engaging patients and the public. For example:• Practice and middle managers may be interested in what helps to improve outcomes, outputs, service quality? what new information or communication systems are needed?• GPs, clinicians, practice nurses, frontline staff may be interested in how to manage risks, how to provide the best care, how to provide safe services, how to provide the best quality they can• HR managers may be interested in what the implications of PPE for staff? and how do we bring about a cultural change to the organisation?• Finance managers may be interested in efficiency issues, can PPE reduce future investment needs in public services?• Performance managers may want to assess the outcomes of PPE?• Chief executives may ask how can PPE be used as an efficiency strategy? Local councillors may ask how does PPE influence accountability?In getting started or refreshing your current PPE practices it is important to bear in mind‘many GP practices are in the enviable position of enjoying long-term relationships withthe patient community served. there is an opportunity to think creatively about how toHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • use these relationships to engage on wider commissioning matters beyond specificpractice issues’ (NLC 2011). ‘The evidence from previous primary care commissioning(Smith and Goodwin 2006) is that larger primary care based organisations struggled toengage practices’ and CCGs need to ensure they are engaged actively with their GPpractices. The RCGP federations toolkit suggests ‘getting practices to come together tocreate a shared vision, share ideas, skills, and provide opportunities for informalnetworking, as well as education in developing collaborative working ‘NAPC/KPMG) asa way of learning together, and sharing resources. ‘Engagement work can beundertaken at a ‘federated level’ across several CCG’s to make it cost effective - as wellas locally, and building from the assets, processes and relationships and engagementthat is already going on in your CCG, and practices.Not everything needs to be engaged upon. There is a difference between tame andwicked issues in the daily work of GP practices and CCGs. Be clear when there is aneed for shared decision making/engagement and when not - tame back stageorganisational processes e.g. changing a light bulb, or ordering new pens do not needengagement. Wicked dilemmas bring people together to solve dilemmas and co-design solutions. Also consider what is needed back stage, & front stage in the CCGsand GP practices? what needs to be ‘shared’? ‘Clarity of purpose is also vital - peoplewill not want to get involved in time consuming process unless they are clear aboutwhat they are setting out to achieve. Given that time, and resource is finite, PPE canbuild over time. Take time to consider where to start, or where to refresh, or continue tobuild based on what you have learnt, or know. Invest in key strands of patientengagement e.g. shared decision making in the clinical encounters, self care courses,effective use of care planning processes rather than trying to engage in everything,particularly initially. Work to enable local task groups of users, carers, professionals tolead and work together on improvements. Try and test out, pilot, or use an example thatworks well, and build from that, and replicate it else where in the practice or CCG.Another option is to invest in specific clinical pathways - patient engagement as part ofthe service redesign, investment, disinvestment, as well as focusing on the systematicbuilding of the necessary CCG or GP practice infrastructure e.g. organisational policies,culture, data systems, and daily working practices. This includes building on alreadysystematic processes, statutory processes such as building on complaints, serious anduntoward incidents, must dos, and ensuring the data from these is analysed,synthesised, shared, learnt from.Using engagement activity in commissioning for CCGs is an imperative, engaging onstrategic planning, procurement and management are three broad activities and,strategic planning can benefit from whole health economy engagement in determiningpriorities for investment/disinvestment. Engaging, bearing in mind the processesrelating to procurement laws - ‘procurement guide for commissioners of NHS-fundedservices recommends; ‘to get maximum benefit, engagement should be with bothcurrent and potential providers and take place as part of an ongoing exercise’. GettingPPE into the management of demand and performance can be challenging, but CCGs,and GP practices can capture patient experience, undertake complaints analyses, lookat patient mystery shopping etc. Involving patients in clinical audit is another area CCGsand GP practices can consider, and build upon, in that ‘clinical audit must includepatients. They, as well as clinicians, are the true professionals in illness.’ ‘the doctormay be highly qualified to diagnose and give treatment, however, only the patients trulyknow the pain, physical and psychological and the stress of their illness. the patient’sHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • voice is so valuable as part of audit’ (Iain Thomas, MINAP representative, Member ofthe SW London Cardiac and Stroke Network quoted in HQIP PPE in clinical audit 2009)As mentioned above, keep an eye on language, and regularly do a language check - arewe clear, do we have a common understanding? so as to create simple languageamongst ourselves and our patients and the public and one that manages expectationsand enables shared understanding, is educational, and names the dilemma, and,enables a language to talk about it if needs be. ‘Sharing information quickly and easilyrequires clear straight forward language. it requires thought, discipline andexperience’ (Wrixon 2011). ‘Making a success of clinical commissioning will involveexchanging large amounts of information not only between those who are in on thejargon but also with patients and the public. If clinical commissioning groups are tocommunicate effectively they need to ditch jargon in favour of plain speaking.’ (Wrixon2011) ‘impenetrable documentation obstructs progress. Not only does jargon slowthings down it also provides a space for misunderstanding and reduces transparency’.Together with language, encourage ‘expectation checks’ amongst clinicians,commissioners, providers, patients, public, carers, so that there are nomisunderstandings related to expectations whether they be about quality of service,what is on offer, how it is offered, and how accessible it is etc.Enabling PPE towards a systematic and consistent foundation requires a deliberate-ness, a conscious effort with regular reviews to understand what is effective.‘Engagement requires time and effort so the commitment should not beunderestimated.’ (Stout 2011)10. Ensuring PPE is effectiveA common question asked about PPE is ‘what is good practice? where can we find it?who is doing best practice PPE? and consideration needs to be made into what exactlydo we mean by ‘best practice’? A key question here is ‘what does PPE mean - for uslocally in context? what is our way? what is best practice in our context? There aremany views and perspectives:• ensuring participants are actively involved at every stage and kept informed of progress achieved demonstrating how engagement is influencing service change, planning and the commissioning cycle etc. Present results and share outcomes, and regularly evaluate and review your PPE processes for effectiveness• good engagement would consist of: • focused on culture and relationships rather than structures or techniques • integral to all activity • strategic, clear and co-ordinated, and purposeful, and focused • open and transparent, • resourced and supported • inclusive and flexible and collaborative • sustainable, and focused on improvement• To understand best practice it needs markers, standards, and indicators - otherwise we are comparing ‘apples with cars’.• Jeremy Taylor, National Voices (2011) suggests - have the NHS Constitution at the forefront of your mind ‘its our NHS’; recognise that involving people is fundamental;Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • not a ‘nice to have’; do everything you can to encourage shared decision-making between clinicians and their patients; be hungry for intelligence on customer insight and experience; map the needs of different segments of your population; be participative, value and deploy the expertise and insight of others; see your lay members as a source of strength and enhanced reputation; embrace your transparency requirements; you do not have to do this all on your own - good patient and public involvement is a shared responsibility for all statutory bodies involved in health and social care, let others help you...’(Taylor 2011)• ‘practice managers and clinical leaders have a real opportunity to lead the way and provide real clarity in the new health landscape... and this means without doubt, that the jargon bug must be eradicated’ (Wrixon 2011)• moving away from inputs - PPE is riddled with inputs (meetings), and some outputs (policy or strategy) its time to practice outcome based PPE - health and relational outcomes, changes in the way we are with one another.• ‘what will characterise the best clinical commissioning? (Dr. foster intelligence 2011) - focusing on patients and populations; collaborating and engaging; being transparent; creating pathways and care packages; paying for outcomes.‘The best commissioners will recognise a range of key people as experts who can be enlisted to support effective commissioning, they will build new kinds of relationships with patients and the local communities establishing themselves as the ‘peoples organisation’ - keep your responsibility to the population centre stage’• ‘an effective governing body will make stakeholder engagement a key mechanism for demonstrating openness, transparency and accountability, one of the challenges facing CCGs will be the complexity and range of stakeholders they need to engage with, including patients and the wider public, the first task will be to identify these stakeholders, clearly mapping relationships (NAPC/KPMG).• CCGs must ensure that individuals to whom the services are being or may be provided, are involved in commissioning and in any changes to commissioning arrangements, where these would result in changes to delivery of or access to services. (CCG guidance towards authorisation)• Utilising and developing what you already have - mapping and understanding the range of existing PPE mechanisms locally, and sources of intelligence already and how these are used, and how effective they are e.g. GPs and practice staff already have extensive experience of engaging with patients whether in consultations conversations at reception or through patient participant groups. This includes checking with local PCTs what they had had in place, and what will happen to these arrangements during and after the current transition related to PCTs etc.• CCGs need to show mechanisms for gaining a broad range of views then analysing and acting on these. It should be evident how the views of individual patients are translated into commissioning decisions and how the voice of each practice population will be sought and acted on. CCGs need to promote shared decision- making with patients about their care’ (DH 2011)• ‘high quality information empowers people. With poor information they cannot make effective choices; and without information they have no real choices at all’ (Department of Health 2004:3)• ‘failed PPE can pose risks to organisations, and a failed PPE project can damage trust and lead populations to disengage, treating invitations to join consultation exercises etc with cynicism.’ (NHS Confederation 2011:2)• ‘There is evidence that information is far more effective when it is delivered as part of an education programme’ (Ellins & McIver 2009)Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • ‘a lot of wasted resources are going into useless engagement because people lose track of purpose and don’t think about where the data is going to land and how its going to be put together’ David Gilbert, Inhealth Associates• ‘the experiences of some pathfinders which have already made headway on local engagement plans suggest that while successful engagement requires some effort to get up and running initially, once established it need not add significantly to their commissioning workload’ (Stout 2011)• Feedback loops will not only enable effective PPE, but also validate PPE and how effective it is. They are essential, it is not a one way linear process.For Domain 2 CCG authorisation it states that ‘meaningful engagement with patients,carers, and their communities: CCGs need to be able to show how they will ensureinclusion of patients, public, communities of interest and geography, health andwellbeing boards and local authorities in everything they do, especially theircommissioning decisions. they should include mechanisms for gaining a broad range ofviews then analysing and acting on these. It should be evident how the views ofindividual decisions and how the voice of each practice population will be sought andacted on’. In summary emerging CCGs should be able to describe the arrangementsthey are putting in place to ensure they can effectively engaged with and gather insightfrom patients, carers, and public including disadvantaged groups and that the results ofthis engagement is reflected in the decision making processes for the CCG, includingengagement throughout he commissioning cycle and in the major commissioningdecisions, service improvement and service redesign, integration, as well as transparentgovernance arrangements that deliver local accountability, promoting choice throughshared decision making’.11. GovernanceIt feels important to highlight governance briefly here, in terms of public value, and whatadds value to the public sphere, and governance forms part of this. One of the keys tothis will be to identify with whom a (CCG) governance group needs to engage and forwhat purpose. ‘CCGs need to ensure there is a central group or committee thatreceives patient experience information from a variety of sources, includingconversations, JSNA, PALs significant untoward incidents, audits and NHS choices.This could all be processed for instance with the support and expertise of Healthwatch.‘The contactual Duty of Candor in healthcare will be an enforceable duty on providers tobe open and honest with patients or their families when things go wrong ensuring theyreceive information about any investigations and encouraging the NHS to learn lessons.Being open with patients when something goes wrong is a key component ofdeveloping a safety culture; a culture where all incidents are reported, discussed,investigated and learned from. (DH 2011)’. CCGs as part of their setting up will need todevelop a culture of openness, which is part of how a ‘modern NHS should be - openand accountable to the public and patients to drive improvements in care’. (DH 2011).Lay members are part of the CCGs governance, and engagement. There needs to beconsideration of the level of responsibility for lay members on the CCG board andaccountability, and the way they are rewarded, and, this would include transparentrecruitment processes, not co-option as that will smack of cronyism and reducecredibility. ‘Unpaid volunteer basis for lay membership of boards is setting people up tofail and be ineffective’. There are ‘two sorts of lay members on boards governance- anHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • insider role, keeping the board focused on the business, working with patients, public,and representational (e.g. Healthwatch) supra-PPG who maintains an outsiderperspective (Gilbert Inhealth 2011). Voting and voting rights needs to be clear in jobdescriptions and role descriptions. ‘The elected board must include ‘at least two laymembers - one of whom will lead on patient and public involvement, and the other willoversee key governance issues such as audit, remuneration and managing conflicts ofinterest’ (BMA 2012).‘The wide-ranging literature demonstrates that effectivegovernance means giving priority to understanding the perspectives of keystakeholders - both internal and beyond the clinical commissioning group. Engagingeffectively is an important way that a governance group and the CCG as a whole candemonstrate its openness, transparency and ultimately accountability’ (NLC (2011).Using lessons from complaints can, amongst other things, be a valuable way toinfluence improvement.12. EthicsThere are also ethical considerations. The BMA (2011) state ‘it is very important thatpatient involvement is implemented well and that patients well being and dignity aredefended. At present there is no national framework for PPI governance (includingethical committee requirement). This requires due consideration of the individual,providing information about what you would like those involved and engaged to do, andwhat you will do with the information, ensuring confidentiality. ‘Lay representatives orgroups can be very helpful in working through tough ethical choices facingcommissioners’ (RCGP 2011:3).13. Websites, and other resourcesThis section offers some websites, approaches, models, and case studies (or placeswhere case studies can be found). It does not specifically advocate any of theseresources, but is to share a range of what is around at the moment.a. Governance:‘Representatives on committees’ ‘this is a basic approach that should be seen as goodpractice. Having lay people on committees can profoundly change the nature ofconversations’ ‘it needs to be made clear to the lay delegates on the committees thatthey are a gateway to other groups and individuals outside.’ they should becommunicating with them and bringing their views to the table, you are not expectingthem to represent all people. Most CCGs will have arrangements for paying layrepresentatives. there are examples of how this can be done. RCGP (2011) provide ane x a m p l e v i a w w w. n o t t i n g h a m p r i n c i p i a . n h s . u k ( P r i n c i p i a ) h t t p : / /www.nottinghamprincipia.nhs.uk/get-involved. Being aware of questions around howcan patient representatives act as a proxy for other groups, can they represent theviews of wider communities? how can they draw upon their own experiences tounderstand the wider dimensions of patient experience? - needs patient representativeswho know the broad dimensions of what matters to the wider patient population, andknowing how to ask the right questions to ensure conversations, meetings andactivities remained focused on patients.b. Patient Participation Groups (PPGs):Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Recent changes to the General Medical Services contract  from April 2011 require GPpractices to promote the proactive engagement of their patients through ‘PatientReference Groups’ and to undertake local surveys. N.A.P.P. has over 30 years experience and expertise in promoting, supporting anddeveloping Patient Participation Groups (PPGs) and has developed a full rangeof  resources that  can support practices and PCTs in implementing this contractualPatient Participation requirement. Patient Participation Groups make an importantcontribution to the well-being of their communities. Their activities include healthpromotion, information provision, service delivery, fundraising and strategic input to thepractice (Community Voices – Developing Virtual Patient Participation). PPGs canconduct patient surveys or collect feedback from patients in the waiting room, advisepractices and patients of new service and treatments, share good practice with otherPPGs, sit on recruitment panels for new staff including GPs, as well as producing adirectory of self support groups, running courses within surgeries on health topics,raising awareness of public health messagesPPG and other case studies at NAPP http://www.napp.org.uk/napp-projects/ppg-case-studies/ as well as Best practice in patient participation http://www.napp.o.rg.uk/napp-projects/best-practice/Virtual PPGs - http://www.ehi.co.uk/news/EHI/6840/virtual-groups-make-involvement-realityc. Staff/workforce engagement:Engaging your staff: the NHS staff engagement resource by NHS Employers http://www.nhsemployers.org/EmploymentPolicyAndPractice/staff-engagement/Pages/Staff-Engagement-And-Involvement.aspx has case studies from Salford Royal NHSFoundation Trust, St Georges Healthcare NHS Trust, Homerton University Hospital NHSFoundation trust, South Essex University Hospital Foundation Trust,Royal BoltonHospital NHS Foundation Trust, the Walton Centre NHS Foundation Trust.Department for business information and skills - http://www.bis.gov.uk/policies/employment-matters/strategies/employee-engagement - Macleod review - a reportfeaturing multiple case studies and discussion of the wider evidenceEngaging with primary healthcare professionals to improve the health of the localpopulation - http://www.psnc.org.uk/data/files/News_article_documents/LA_and_LRC_engagement.PDFd. Self management:http://selfmanagement.kyoh.org/what-is-self-management.html - Know your own healthself management tools -KYOH is an online self-management service. Specificallydesigned to help people build up their confidence and capability to self-manage theirhealth.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Treasure your wellbeing www.treasureyourwellbeing.org - design as an online tool toenable service users to monitor, improve and sustain their well-being on their own,primarily on discharge from acute mental health wards (by Mersey Care NHS Trust)Co-Creating health: a self management support programme (Health Foundation 2011:7)Around 18 million people in the UK live with a long term condition such as diabetes,depression, heart disease or arthritis, and this number is expected to double by 2030.This offers apatient - self-management support programme; - agenda setting:goalsetting, clinician - advanced development programme for clinicians; agenda setting,goal setting, healthcare system - a service improvement programme to embed selfmanagement support processes, agenda setting, goal setting as a whole cycle.www.heath.org.uk/sms (self management support).Co-creating health Programme -Health Foundation www.health.org.uk/cch‘The Expert Patient Programme is a much-cited example of a self care programme thatbenefits from insights from service users and recognises patents as people withresources. `the programme has already supported over 50,000 people to developdisease management skills and trained more than 1,700 volunteers as expert patients.(NESTA 2009) http://www.expertpatients.co.uk/http://www.health.org.uk/areas-of-work/programmes/shared-decision-making/case-studies/north-east-newcastle-collingwood-and-central-surgeries-methods-for-changing-clinician-behaviour/ (Magic Programme, Health Foundation)http://selfmanagement.kyoh.org/what-is-self-management.html - know your own health(KYOH) - KYOH is an integrated self-management serviceSpecifically designed to help people build up their confidence and capabilityto self-manage their health.http://www.carepages.com/ - CarePages websites are free patient blogs that connectfriends and family during a health challengeThe Health Foundation Health foundation (2011) (3) can changing clinical-patientinteractions improve healthcare quality? a scoping report for the Health FoundationDecember. Martin Fischer and Gill Ereaut - research on clinician-patient interactionThe Health Foundation: Self-Management Support Resource Centre. This resourcecentre is packed full of information and practical resources that can be adopted andadapted locally to help services and health professionals to develop their own self-management support programmes. www.health.org.ukNHS Diabetes The Year of Care programme sets out to learn how routine care can beredesigned and commissioned to provide a personalised approach for people withlong-term conditions.www.diabetes.nhs.ukHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • http://www.health.org.uk/public/cms/75/76/313/3293/Leading%20the%20way%20to%20shared%20decision%20making.pdf?realName=kWvz0K.pdf Summit report:Leading the way to shared decision making. The critical steps for the NHSCommissioning Board to make ‘no decision about me, without me’ a reality. February2012The Health Foundation: Making Good Decisions in Collaboration (MAGIC) http://www.health.org.uk/areas-of-work/programmes/shared-decision-making/Our MAGIC programme is working with frontline health professionals and their priorityprojects across the UK to test how to embed best practice and overcome the barriersto change.Coulter, Angela & Collins, Alf (2011) Making shared decision-making a reality. Nodecision about me, without me.The Kings Fund - tools include patient decision aids e.g.www.decisionaid.ohri.ca, and www.thedecisionaidcollection.nl.http://www.dh.gov.uk/health/category/policy-areas/nhs/personal-budgets/ - personalhealth budgets pilotsPain Toolkit - The Pain Toolkit is a simple information booklet that could provide youwith some handy tips and skills to support you along the way to managing your pain. Itis not meant to be the last word in pain self-management but a handy guide to help youget started - all you need to be is willing to read it and take on board some of thesuggestions.www.paintoolkit.orgHealth Talk Online is the award-winning website of the DIPEx charity. Healthtalkonlineand its sister website, Youthhealthtalk, let you share in more than 2,000 peoplesexperiences of over 60 health-related conditions and illnesses.www.healthtalkonline.orgco-creating health:a self management support programme -http://www.health.org.uk/areas-of-work/programmes/co-creating-health/e. Patient participation, lay health workers, and other PPE initiatives:case studies - NAPP publication - primary care trusts - promoting excellence in patientparticipation - http://www.growingppgs.com/fileadmin/user_upload/other_pdfs/PCT%20Newsletter%20-%20final.pdfNational Association for Patient Participation - http://www.napp.org.ukhttp://www.patientslikeme.com/ - patients like me PatientsLikeMe is committed toputting patients first. We do this by providing a better, more effective way for you toshare your real-world health experiences in order to help yourself, other patients likeyou and organizations that focus on your conditions. is an online social networkdeveloped in the US for patients to share information with others that live with similarlong-term conditions.Support and advice is available from a large number of places and providers includingthe RCGP Centre for Commissioning, National Voluntary Groups and Organisations,SHA and PCT engagement and experience leads (until April 2013), Provider TrustEngagement and experience leads, Local Involvement Networks (LINKs) and LocalHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Health Watch, the National Association for Patient Participation, The NationalAssociation of Primary Care (NAPC) as well as www.institute.nhs.uk/engagementandexperience, and a Patient and Public involvement toolkit for doctors bythe BMANHS Institute for Innovation and Improvement - the Rough guide to experience andengagement for GP consortia P 8 - 9NHS Confederation (2011) Patient and Public Engagement in the New CommissioningGroups - case studies and a helpful table outlining common techniques used inengagement work (p4)The NHS Constitution: The NHS belongs to us all (NHS, March 2010)http://w w w. d h . g o v. u k / e n / P u b l i c a t i o n s a n d s t a t i s t i c s / P u b l i c a t i o n s /PublicationsPolicyAndGuidance/DH_113613Lay health workers - http://researchonline.lshtm.ac.uk/12820/Lay health workers in primary and community health care. (NESTA 2009 - communityparticipation in Merseyside and Slough. Lewin, S; Dick, J; Pond, P; Zwarenstein, M; Aja,G; van Wyk, B; Bosch-Capblanch, X; Patrick, M; (2005) Lay health workers in primaryand community health care. Cochrane Database Syst Rev, CD0040 (1). CD004015.ISSN 1469-493X DOI: 10.1002/14651858.CD004015.pub2h t t p : / / w w w. n o r t h e r n - c o n s o r t i u m . o rg . u k / P a g e / Q u a l i t y O f L i f e /Afootinthedoorpublication.aspxa toolkit - co-designed with health, public health, social care and housing colleagues -that will help the housing sector play a stronger and more visible role in tackling healthinequalities and improving outcomescitizens councils - http://www.nice.org.uk/aboutnice/howwework/citizenscouncil/citizens_council.jsphttp://www.nhsconfed.org/Publications/briefings/Pages/Joining-the-conversation.aspx- case studies and briefing on social media and mental health serviceshttp://healthandcare.dh.gov.uk/resources-pathfinders/case-studies/ - engaging patientscase studies for pathfindersRCGP Centre for Commissioning - http://commissioning.rcgp.org.uk/Closing the Gap Programme - Closing the Gap is our improvement programmededicated to bridging the gap between best practice and routine delivery of care.Health Foundation. http://www.health.org.uk/areas-of-work/programmes/closing-the-gap-through-changing-relationships/Patient Opinion www.patientopinion.org.uk ‘patient opinion is completely independentof any NHS organisation - its a valuable source of feedback - although there isextensive service user feedback, involvement, pals, complaints etc, patient opinionallows the organisation to hear actual stories of peoples experiences - includingpositive stories and opinions.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • http://www.ic.nhs.uk/statistics-and-data-collections/social-care/user-surveys/personal-social-services-adult-social-care-survey-england--provisional-2010-11The user experience survey programme operates on an annual basis and is used totarget areas of particular interest within adult social services. opinions are sought over arange of service areas to gain an understanding of service users’ views rather thanmeasuring quantities of care delivered.h t t p : / / w w w . d h . g o v. u k / e n / P u b l i c a t i o n s a n d s t a t i s t i c s / P u b l i c a t i o n s /PublicationsPolicyAndGuidance/DH_106038 - putting people at the heart of care(Department of Health 2009)HealthTalkOnline - http://www.healthtalkonline.org/ Healthtalkonline is the award-winning website of the DIPEx charity. Healthtalkonline and its sister website,Youthhealthtalk, let you share in more than 2,000 peoples experiences of over 60health-related conditions and illnesses. You can watch video or listen to audio clips ofthe interviews, read about peoples experiences if you prefer and find reliableinformation about specific conditions, treatment choices and support.INVOLVE - Involve are experts in public participation. We believe passionately in ademocracy where citizens are empowered to take and influence the decisions thataffect their lives - http://www.involve.org.uk/MAC partnership LLC - http://www.publicinvolvement.org.uk/ - developing userresponsive organisations, supporting user and public participation - making sense ofuser engagement; involving users, carers and the public, developing user ledcommissioning, supporting lay leaders, using data as business intelligenceInHealth Associates -http://www.inhealthassociates.co.uk/Patient-centred management consultants. We provide advice and support for NHS andThird Sector organisations that  focuses on  what matters to  patients. We promote theinvolvement of patients and the public in everyday healthcare practice.We  provide  strategic advice, organisational development and leadership support. Wealso run workshops, conduct presentations and seminars and undertake research.We work at all levels of the organisation, including Boards and senior managementteams. All our work means engaging with partner organisations, clinical and non-clinicalstaff, patients, members of the public, patient groups, voluntary and communityorganisations and LINks.N a t i o n a l Vo i c e s - P e o p l e S h a p i n g h e a l t h a n d s o c i a l c a re - h t t p : / /www.nationalvoices.org.uk/http://www.napp.org.uk/ - National Association for Patient Participationwww.pickereurope.org - Picker Institute Europe is a not-for-profit organisation thatmakes patients views count in healthcare. We: • build and use evidence to champion the best possible patient-centred care • work with patients, professionals and policy makers to strive continuously for the highest standards of patient experience.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • www.patientopinion.org.uk - Patient Opinion was founded in 2005 and since then hasgrown to be the UKs leading independent non-profit feedback platform for healthservices. Patient Opinion is about honest and meaningful conversations betweenpatients and health services. We believe that your story can help make health servicesbetter.How it works: 1. Share your story of using a health service 2. We send your story to staff so that they can learn from it 3. You might get a response 4. Your story might help staff to change servicespublic health outcomes framework - http://www.dh.gov.uk/health/2012/01/public-health-outcomes/http://www.cfps.org.uk/ The Centre for Public Scrutiny is a small charity whose principalfocus is on scrutiny, accountability and good governance, both in the public sector andamongst those people and organisations who deliver publicly-funded services.http://www.healthissuescentre.org.au/home.shtml - an Australian independent healthpolicy research and action centre - ‘create meaningful and sustainable participation inyour organisation. (Consumer leadership, consumer engagement etc)About the CPE http://www.bristol.ac.uk/public-engagement/The Centre for Public Engagement works with academics to engage the public throughevents, direct involvement in research and teaching, and other activities. We providesupport for colleagues to share their work effectively and aim to stimulate discussionbetween members of the public and the University.We work alongside the National Coordinating Centre for Public Engagement (NCCPE)which aims to increase the quantity and quality of public engagement in all UKuniversities.http://www.publicengagement.ac.uk/http://www.healthcare.leeds.ac.uk/enterprise/cpd4healthinnovation/patient-led-innovation.htmhttp://www.scie.org.uk/publications/reports/report53-easyread.pdf - Towards co-production taking participation to the next level - Reporthttp://www.idea.gov.uk/idk/core/page.do?pageId=33548410Must-knows on health and wellbeing by the Improvement and Development AgencyPatient experience outpatient survey 2011 - Most patients rate NHS care good orexcellent - Patients continue to report improvements in aspects of care that mattermost to them, and 84 per cent of patients rated their experience as excellent or verygood, according to the results of the 2011 Patient Experience Outpatient Survey. TheHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • results published show that more patients are being treated with respect and dignityand felt they were involved in decisions about their care and treatment and in theamount of information given to them about their treatment.Most patients rate NHS caregood or excellent. Research links online patient feedback and hospital performance.Independent research linking patient feedback left on the NHS Choices website andobjective measures of hospital performance has been published by Imperial CollegeLondon. Better-rated hospitals tend to have lower death rates and lower readmissionrates. Hospitals rated as cleaner by patients have also been found to have lower MRSArates. The research is significant because it’s the first to link unsolicited patient ratingsand objective measures of quality, signalling that online patient feedback may be moreinsightful and valuable than previously thought. The Government welcomes thesefindings, which highlight the importance of patients’ having a stronger voice in the NHS.http://www.networks.nhs.uk/networks/news/research-links-online-patient-feedback-and-hospital-performancehttp://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_132788.pdf -NHS Patient Experience Framework- In October 2011 theNHS National Quality Board (NQB) agreed on a working definition of patient experienceto guide the measurement of patient experience across the NHS. This frameworkoutlines those elements which are critical to the patients’ experience of NHS Services.(outlined in appendix 2 below)PLI involves innovating existing products and services to meet the needs of patientsand carers, by engaging with patients throughout an innovation-led design process.School of Healthcarehttp://www.nhsalliance.org/member-networks/public-patient-involvement/?no_cache=1&tx_damfrontend_pi1%5Bpointer%5D=1 NHS Alliance Patient and PublicInvolvement grouphttp://www.hqip.org.uk/assets/PPE/HQIP-PPE-Guidance.pdf - PPE in clinical Audit -guide and case studiesf. Personal Health Budgets and Disability ‘right to control’:http://odi.dwp.gov.uk/odi-projects/right-to-control-trailblazers.php Right to Control -new legal right for disabled people, giving them more choice and control over thesupport they need to go about their daily livesPersonal health budgets - pilots, central to the new policy direction for healthcare inEngland http://www.dh.gov.uk/health/category/policy-areas/nhs/personal-budgets/Personal health budgets allow people to have more choice, flexibility and control overthe health services and care they receive. At the heart of a personal health budget is acare plan, the agreement between the primary care trust and the individual that sets outthe person’s health needs, the amount of money available to meet those needs andhow this money will be spent.http://odi.dwp.gov.uk/odi-projects/right-to-control-trailblazers.php Right to Control -new legal right for disabled people, giving them more choice and control over thesupport they need to go about their daily livesHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • g. The High street:`pilot, test, create, co-create, learn, feedback loop to selves on what worksgreat customer service learn from customer experience e.g. John Lewis. (Jeremy Taylor2012)What the NHS can learn from high street on patient feedback - (Guardian 2012) - ‘fromin-store questionnaire to online surveys, giving feedback is an accepted part of our highstreet shopping experience. Retails dedicate a huge amount of effort and mooneytowards finding out our views on every aspect of a visit to their stores because itprovides managers with crucial information to make improvement that keep them aheadof their competitors... but in the NHS there is public and clinical suspicion thatanswering patient services is a fast tracy way to file unread feedback into a hospital andthis perception needs changing... ‘too often hospitals create questionnaires that captureinformation that is useless in driving service improvements’... The retail sector is fullyaware that to gather feedback is asking customers to donate their own time, so realisesevery second should be put to best use... questions must be geared to wards thethings that matter for most customers, patients... and on areas that can actually beimproved upon... retailers are wary of boring their customers, so too should the NHSbe... the biggest challenge is turning data into meaningful actions... patients need to betreated as real-time data and not as material for a retrospective evaluation.. (e.g. notwait until the next board meeting) and the information needs to be acted uponimmediately... staff at all levels need to be engaged with the feedback process, not justmanagement... there is no shortage of opinions... and a wealth of patient data ready tobe collected by the right questions and making use of the answers.14. ModelsThere are many suggested models for PPE. David Gilbert from Inhealth Associates(2011) use a conceptual framework for PPE and offers a practical, sensible way forCCGs and GP practices.When looking at engaging at an individual level CCGs and practices can consider: ‘mysay in decisions about care and treatment’ - information to patients about treatments(communications), feedback e.g. PALS, complaints; influence e.g. expert patient andadvocacyWhen looking at engaging at a collective level - ‘our say in planning, design and deliveryof services - information to citizens about services (communications), feedback e.g.patient experience data, consultation, trends in PALS, complaints data, LINKs, andinfluence e.g. representation and involvement in decision making (David GilbertInhealth)Model of engagement in commissioning by David Gilbert of Inhealth Associates:-Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • The engagement cycle was developed by InHealth Associates, on behalf of the Department of Health. It was based on work carried out with Croydon PCT. ‘It has been developed and tested with national stakeholders and the following organisations: NHS Coventry, Dudley PCT, NHS Sheffield, NHS Suffolk, West Sussex PCT. The engagement cycle was initially a way of approaching Patient and Public Engagement (PPE) in World Class Commissioning. It is a representational model that highlights who needs to do what to engage patients and the public at each stage of the commissioning cycle. It can be used to facilitate improvements in Commissioning. The engagement cycle is not a toolkit, but a starting point for thinking about PPE in commissioning. It provides checklists for action and will be developed to include links to policy documents, case studies, toolkits and other materials.’ It has been used so far to undertake assessments of who is doing what at each stage of the cycle, to help develop action plans, identify learning and support needs and as a a basis for PPE strategies and organisational development plans. Since it was developed it has been researched and adapted for the NHS Institute (Dec 2011 - 2012) - The Engagement Cycle: Undertaking research in order to develop a new iteration of the Engagement Cycle for Clinical Commissioning Groups by David Gilbert Inhealth.RCGP Centre for Commissioning Clinical Commissioning Cycle - (2011:11) ‘analyse andplan (listen use data, agree outcomes, engage, involve), design pathways (respondCCG commissioning plan, and e.g. pathway design completed with patients), specifyHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • and procure (respond - patient-derived outcome measures, and third sector providersengagement), deliver and improve (monitoring, complaints, feedback etc)A commonly used ‘model’ is Arnsteins ladder of participation (1969) (and there aremany similar models - if you google Arnstein, or ladders of participation or related thereare others too based on the same theme).Amongst many other models, Forbat, Hubbard & Kearney (2009 table 1) - suggest ‘fourmodels of involvement’:Who What Ideological driversPatient as consumer Purchase/choice of service free-market economicsPatient as citizen Policy & Service planning social-democraticPatient/partner aspartner Care Practice Experiential knowledgepatient as researcher Co-research Emancipation/empowerment15. Tools and techniquesThere is no lack of tools, experience, ideas, and a vast array of techniques andtechnology used for PPE. Are they all fit for purpose now? From the many tools andHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • techniques and approaches that can be used all of which have their advantages, anddisadvantages, and appropriate for different groups, or individuals and not necessarilyone size fits all. Social media is a generic term used to describe a range of onlineapplications that enable interactive communication between users, in contract withtraditional media, participants can both consume and communicate information throughsocial media. Considerations include:• ‘Most information about local health services is provided either as written leaflets or through the internet. However some groups (e.g. low income and ethnic minority groups) are more likely to encounter problems understanding written text and/or accessing the internet. There is a risk that current approaches will reinforce existing patterns of information seeking rather than empower new categories of health care consumer’ Ellins & Mciver 2009).• ‘Some people will need support to access, make sense of and use information on local services, including telephone support by trained advisors, patient decision aids and community based education’ (Ellins & McIver 2009.• Pictorial methods suggest ‘a review of evidence on the role of pictures in health communication confirmed that patients with low literacy skills are most likely to benefit (Houts et al 2006).• One of the downsides of many alternative formats is that they fail to reach people who are least well served by the health system, and therefore most in need of high quality information about how to chose and access services’ (Ellins and McIver 2009)• ‘Evaluations have generally shown that patients find kiosks easy to operate and understand (Nicholas et al 2001)’For engaging individuals the tools, techniques and approaches includeinformational and educational:• patient leaflets, literature, videos, DVDs, audio downloads,• service prospectus• patient held records• patient diaries• discussions during patient-clinician consultation• individual influence through shared decision making between patients, carers and professionals• health MOTs• structured education sessions e.g. for diabetesGauging views, engaging ideas and feedback:• face to face interviews - (an inclusive method as no technological barrier, qualitative source, human dynamic, stories in real time or near to real time, reasons why can be explored, but they take longer and produce fewer responses, and the interviewer can have a moderating effect on responses)• paper based methods such as postal questionnaires, comment cards, feedback forms - (cheap, convenient, user friendly, large quantities of quantitative data, not so good for qualitative data, poor response rates to postal questionnaires)• complaints• comment cards• suggestion boxes• complimentsHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • telephone surveys and interviews - (response rates higher for pre arranged calls, detailed responses can be provided, but it is more costly and the interviewer can moderate results, not so good for random calls)Technological based ideas/solutions:• online questionnaires - (self administration, can gather a lot of data, ease and convenient, but require IT literacy, and need to keep short as if over ’18 minutes’ respondent drop off occurs)• bedside terminals - self selected, touch screen, but mainly quantitative data unless keyboard provided for free text• digital televisions• telephone helplines• hand held devices - PDA (personal digital assistants) - real time feedback - hand held computer user friendly, high numbers of responses in short space of time, flexibility to change questions (but not all are suited to the technology, where assistance is required the user looses anonymity, mostly quantitative responses,• online panels/members panels/online communities - useful for quantitative data, large amounts of info/data, but building online communities is initially time consuming, and they require expertise to monitor, moderate, maintain.• touch screen kiosks - (anonymity, self selected sample, user friendly and number of questions variable, but certain groups may not be IT literate, kiosks need to be visible enough to be used, time pressures may prevent people from using it, mostly quantitative data)For engaging Collectively tools, technology and ideas include:• Federated (amongst or across CCGs or amongst or across practices) - approaches to CCGs to make cost effective• Information drops• citizens councils• critical friends (patients on committees, at meetings acting as a critical friend)• working with local community leaders to engage with under represented local people - e.g. as intermediaries• mystery shopping• annual reports on PPE and PPE strategy• annual plans• kiosks in public areas such as shops• performance information• having leaflets and posters in community pharmacies as well as practices• clinical governance reports• press and media (e.g. radio) publicity• patients panels• complaints monitoring and analysis• Experience-based design (captures users, patients experiences an stories to support service design)• membership models (e.g. as used in NHS Foundation Trusts, and Hull PCT)• focus groups• patient user groups• stakeholder events• local health alliances,Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • partnership forums• lay representation on NHS boards/bodies• public meetings• patient reported outcomes• patient experience measures and stories - valuable intelligence• National and local surveys• World cafe, other style of large and small group forums for engagement• Patient Liaison groups• education forums or sessions or educational approaches, manuals, etc• appoint a social media champion• Patient participation groups, and other patient groups• PALS and complaints• Patient panels• Social media - CCG and GP websites IPADs for use at community group meetings, electronic notice boards on line (e.g. NHS Choices and Patient Opinion) online technology including NHS choices and patient opinion internet discussions Twitter, Facebook, using other organisational websites, online information hubs, SMS text messages, blogs virtual patient groups, Mobile engagement kiosks that can be at local events (e.g. the village shop, or Womens institute meeting)• Citizens juriesHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • 16. References (and some more websites):AHMAD S, 2010, ‘Public engagement - why bother? Exploring the conditions underwhich public engagement practices in local healthcare decision making matters’, Open Access Dissertations and Theses. Paper 4177.PDF Downloaded 22nd September 2011 from: http://digitalcommons.mcmaster.ca/opendissertations/4177Arkin Anat (2011) Is engagement working? People Management p22-27 NovemberArnstein, Sherry R. "A Ladder of Citizen Participation," JAIP, Vol. 35, No. 4, July 1969,pp. 216-224BENINGTON J, 2007, ‘From Private Choice To Public Value?’, Draft Chapterfor publication in Benington J and Moore M (editors),2007,’In Search of Public Value –Beyond Private Choice’, Palgrave.PDF Downloaded 22 nd September 2011 from: http://www.cihm.leeds.ac.uk/document_downloads/John_BeningtonPrivate_Choice_to_Public_Value.pdfBMA (2012) Clinical commissioning group constitutions. General PractitionersCommittee. January. GPC white paper no 15BROWN H, 2009, ‘A guide to capturing and using patient, public and service userfeedback effectively’. Birmingham: Health Services Management Centre (HSMC) andNHS West Midlands.PDF downloaded 22nd September 2011 from: NHS West Midlands guide...patient publicand service user feedback.pdfALSO see: · Patients Information Forum: http://www.pifonline.org.uk/ [a useful website] · HSMC publications related to patient experience and public involvement: http:// www.birmingham.ac.uk/research/activity/social-policy/patient-experience/ publications/index.aspx · West Midland QI site: http://www.wmqi.westmidlands.nhs.uk/Burns, S., D, Boyle and K Krogh (2002) putting the life back into our health services.London: New Economics Foundation.BUNT & HARRIS, 2009, ‘The Human Factor: How transforming healthcare to involve thepublic can save money and save lives’, NESTA Discussion Paper (November), London:NESTA.PDF downloaded 22nd September 2011 from: http://www.nesta.org.uk/publications/assets/features/the_human_factorCfPS (2011) Smoothing the way; developing local heathwatch through lessons fromlocal involvement networks. Centre for Public ScrutinyCIPD 2011-2012 Employee Outlook Survey WinterColin-Thome Professor David (2011) in dr foster. The Intelligent Board. SeptemberHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Coulter, A. and Ellins, J. (2006) Patient focused interventions: A review of the evidence,London: Health Foundation.Coulter, Angela & Collins, Alf (2011) Making shared decision-making a reality. Nodecision about me, without me.The Kings FundCoulter Angela (2009) Implementing shared decision making in the UK: a report for theHealth FoundationDawson Tere http://www.healthissuescentre.org.au/home.shtmlDepartment of Health (2004) Better information, better choices, better health. Puttinginformation at the centre of health, London: DH.DH Developing clinical commissioning groups: towards authorisation Developingclinical commissioning groups: towards authorisationDepartment of HealthPublished date:30 September 2011DH (2005) Creating a patient-led NHSDH (2011) Results of GP patient survey Department of Health December 2011DH (2011) A more transparent and safer NHS for patients - implementing a ‘duty ofcandor’ will be a contractual requirement. 10th Octoberdr foster Intelligence (2011) The Intelligent Board - Intelligent Clinical Commissioning.September.DUNSTON R, LEE A, BOUD D P, BRODIE AND CHIARELLA M, 2009, ‘Co-Productionand Health System Reform – From Re-Imagining To Re-Making’, The Australian Journalof Public Administration, Vol. 68, No. 1 (March): pp. 39–52.PDF Downloaded 22 nd September 2011 from: www.cihm.leeds.ac.uk/.../aupa_608_HR_co_productionAJPA_March1.pdfEllins Jo and McIver Shirley (2009) Supporting patients to make informed choices inprimary care: what works? HSMC policy paper 4. May.Feste, C. and Anderson, R. (1995) ‘Empowerment: from philosophy to practice’, PatientEducation and Counseling, 26: 139-144.Forbat Liz, Hubbard Gill, Kearney Nora (2009) Patient and public involvement: modelsand muddles. Journal of clinical nursing 18, 2547-2554Guardian (2012) What the NHS can learn from high street on patient feedback -(Guardian 2012) January 27thGilbert David of Inhealth Associates (2011) The engagement cycle.www.inhealthassociates.co.ukHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Gilbert David, Inhealth Associates (2011) ‘the Patient’s Dozen - what matters to patientsand carers - a briefing paperGilbert David, Inhealth Associates (2011) Big change small steps. what does a patientengaged organisation look like and how do we get there?Goodwin Neil 2012 Paper presented to a consultation exercise in NHS South inFebruary 2012 (Exeter)GREENHALGH T, 2009, ‘Patient and public involvement in chronic illness: beyond theexpert patient’, British Medical Journal, Vol. 338, b.49 (14 March): pp b29-b31.PDF Downloaded 22 nd September 2011 from: http://eprints.ucl.ac.uk/15561/1/15561.pdfHAM C & DeSILVA D, 2009, ‘Integrating care and transforming Community Services:what works? where next?’, Working Paper, Birmingham: University of Birmingham,Health Services Management Centre.PDF Downloaded 22nd September 2011 from:http://www.birmingham.ac.uk/Documents/college-social-sciences/social-policy/HSMC/publications/PolicyPapers/Policy-paper-5.pdfHEALTHCARE COMMISSION, 2009, ‘Listening, Learning, Working Together? A national study of how well healthcare organisations engage local people in planningand improving their services’. PDF Downloaded 22nd September 2011 from:h t t p : / / w w w . c q c . o r g . u k / _ d b / _ d o c u m e n t s /Engaging_patients_&_public_practice_briefing.pdfHealth Foundation (2011) Co-Creating Health: a self management support programmehttp://www.health.org.uk/areas-of-work/programmes/co-creating-health/HEALTH FOUNDATION, 2011,’ Snapshot: Co-creating Health. Building NewRelationships between People with Long-Term Conditions and a Supportive HealthService’, London: the Health Foundation.PDF downloaded 22nd September 2011 from: http://www.health.org.uk/publications/snapshot-co-creating-health/Health Foundation (2011) Response to the NHS Future Forum’s information review.October 21st.Health Foundation (2011) (3) can changing clinical-patient interactions improvehealthcare quality? a scoping report for the Health Foundation December. MartinFischer and Gill EreautHealth Foundation (2011) Helping People help themselves: a review of evidenceconsidering whether it is worthwhile to support self management. MayHoma Peter (2011) On Hearing Voices 24th November p 21 Health Service JournalHouts, P. et al (2006) ‘The role of pictures in improving health communication: a reviewof research on attention, comprehension, recall, andHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • adherence’, Patient Education and Counseling, 61 (2): 173-190HQIP, 2009, ‘Patient and Public Engagement(PPE) in Clinical Audit 2009’,London:Healthcare Quality Improvement Partnership. http://www.hqip.org.ukPDF downloaded on 22nd September 2011 from:www.hqip.org.uk/assets/Downloads/HQIP-PPE-Guidance.pdf (Iain Thomas MINAPrepresentative, Member of the SW London Cardiac and Stroke Network quoted in HQIPPPE in clinical audit 2009 (Healthcare quality improvement partnership)LOEFFLER E, ‘Why co-production is an important topic for local government’,Birmingham: Governance International. Homepage: http://www.govint.org/english.htmlPDF Downloaded 22nd September 2011 from: http://www.govint.org/fileadmin/user_upload/publications/coproduction_why_it_is_important.pdfLondon Pathfinder Toolkit Booklet Two: RoadmapLondon Pathfinder towards authorisation 2011 appendix 3MARTIN G, 2009b, ‘Public and user participation in public service delivery: tensions inpolicy and practice’, Sociology Compass, Vol. 3 No. 2: pp. 310-326.PDF Downloaded 22nd September 2011 from: http://eprints.nottingham.ac.uk/1142/1/Martin_(2009d).pdfMooney Helen (2011) Success is a team effort. 10th November p21-22. Health ServiceJournalMorris David, & Gilchrist Alison (2011) Communities connected:inclusion, participationand common purpose. RSA Projects.NAPP, 2010, ‘Primary Care Trusts: Promoting Excellence in Patient Participation’,National Association for Patient Participation [and others] Newsletter (April).PDF Downloaded 22nd September 2011 from: http://www.growingppgs.com/fileadmin/user_upload/other_pdfs/PCT%20Newsletter%20-%20final.pdfN.B.[Interesting case studies for “Growing PPG Campaign” ALSO look at NAPPs “TenMinute Guides: http://www.napp.org.uk/resources/ten-minute-guides/ and the GrowingPPGs website resources: http://www.growingppgs.com/home/ ]NAPC/KPMG (2011) Good governance for clinical commissioning groups: anintroductory guide. (written by the Kings Fund)NHS constitution http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113613NHS Commissioning Board (2102) Towards establishment:creating responsive andaccountable clinical commissioning groups. 2nd FebruaryNHS Institute for Innovation and Improvement (2011) The Rough Guide to Experienceand Engagement for GP Consortia.NHS Confederation (2011) Patient and public engagement in the new commissioningsystem. Discussion paper. October. Issue 11Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Nicholas, D. et al (2001) ‘Health information: an evaluation of the use of touch screenkiosks in two hospitals’, Health Information andLibraries Journal, 18: 213-219NLC (2011) A development tool to support emerging Clinical Commissioning Groupswith their governance arrangements (National Leadership Council/NHS)National Voices - People Shaping health and social care (2011) Integrated care:what dopatients, service users and carers want? - http://www.nationalvoices.org.uk/OECD, 2009, OECD Literature Review Public Sector Innovation, Final Draft (March)Authors: Frans Nauta, Professor of Public Sector Innovation, Arnhem Business School.HAN University, and Peter Kasbergen.PDF Downloaded 22nd September 2011 from:http://www.lectoraatinnovatie.nl/wp-content/uploads/2009/04/literature-review-public-sector-innovation-20090315.pdfPICKER INSTITUTE, 2009, ‘Patient and Public Engagement: the early impact of worldclass commissioning’, Oxford: Picker Europe (June).PDF downloaded 22nd September 2011 from:http://www.pickereurope.org/item/document/230PICKER INSTITUTE, 2011, ‘The Patient Voice In Revalidation: A Discourse Analysis’ [Areview of patient and public involvement in the development of the medical revalidationframework] authors: Helen Sheldon, Danielle Swain and Louise Harriss, Oxford: PickerEurope (February).PDF Downloaded 22nd September 2011 from: http://www.pickereurope.org/item/document/284Picker Institute (2009) Patient and public engagement - the early impact of world classcommissioning. June http://www.pickereurope.org/RCGP Centre for Commissioning Clinical Commissioning Cycle (2011)RCGP centre for Commissioning (2011) Briefing Guide. effective patient and publicinvolvement. AugustRedding Don (2011) It’s a matter of clear principles: Integrated Care. 24th Novemberp28-29 Health Service JournalREEDER N, 2011, ‘Productivity in UK public services – what went wrong? What couldgo right?’, London: Young Foundation (August). PDF Downloaded 22nd September 2011 from: http://www.youngfoundation.org/files/images/Productivity_in_UK_public_services.pdfSavitt Michael (2011) boost organisational value with engagement-focused talentmanagement. Workspan, Vol 54 No 10 October pp52-58Sinding Christina, Miller, Patricia, Hudak, Pamela, Keller-Olaman, Sue andHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Sussman Jonathan (2011) of time and troubles:patient involvement in the production ofhealthcare disparities. Health (London) 19th August. http:hea.sagepub.com/content/early/2011/08/19/1363459311416833Stevens Michelle (2012) Focus on employee engagement ‘could reduce tribunal claims’People Management Magazine Online 3rd FebruaryStout David (2011) Get Everybody in on the action. Patient and Public Engagement.Health Services Journal. p26-27 27th October.Taylor Jeremy (2011) in dr foster Intelligence - the intelligent Board:clinicalcommissioning September.Tongue Alison (2011) quoted in Target Sighted. 24th November p 6 HSJ supplement onPrimary Care. Health Service Journal.Wrixon Sarah (2011) Jargon Busting. 24th November p 24 Health Service JournalHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Appendix 1 - Diagnostic Questions to ask as a CCG going forward, towards andbeyond authorisationQuestions taken from The London Pathfinder Toolkit Booklet Two: RoadmapEmpowering patients and the public -‘How the pathfinder ensures that patients and thepublic are fully informed and involved in the promotion of their long-term health and theprovision of their care’:• how will you engage with the patients and public?• how will patients and the public be involved in decisions?• how will you empower patients to care for themselves?• Can the CCG demonstrate how it will lead continuous and meaningful engagement with local partners and stakeholders and how that will make a substantive difference to the decisions of the CCG and the way it provides health and care to its local communities?• evidence for strategic communications built into CCG planning and decision-making to support effective commissioning of healthcare?• what plans, systems, processes and resources are in place to measure, analyse and use feedback and insight form patients, carers and their representatives to improve patient experience and the quality, safety and effectiveness of services?• what plans systems, processes an resources are in place to promote the involvement of patients and carers in decisions about their own care and treatment?• to what extent can the CCG provide evidence of patient and public engagement to date and show this has influenced CCG planning to date?• how does the CCG intend to involve patients and the public and use insight from them (national and local) in its decision making processes (including governance, operations and commissioning decisions)?• to what extent is patient and public engagement (including the principle of shared decision making) embedded in the values and culture of the CCG?• what evidence is there that engagement is embedded in values, culture or key processes n the CCG?Appendix 1: Level 3 supporting questionsEmpowering patients and the public: How the pathfinder ensures that patients and thepublic are fully informed and involved in the promotion of their long term health and theprovision of their care:How will you engage with the patients and public?• What is your strategy for engaging with patients and the public and how will you assess its effectiveness?• How will patients and the public be involved in deciding the future direction of the pathfinder, strategic decisions and reshaping service delivery?• How can you demonstrate openness and transparency in engaging with patients and the public?• How will you engage hard to reach, vulnerable and young people’s communities?• How will you use social marketing and other techniques to inform and understand patients’ and carers’ views?Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • • How will you work within existing structures (e.g. local borough council, Healthwatch, voluntary sector, specialist groups) to engage stakeholders?• How will you use informatics and technology to give patients greater control and choice?• How will you work with the public and other stakeholders to reduce health inequalities? How will patients and public be involved in decisions? • How will you involve patients and the public in developing priorities for health outcomes, targets and better attainment of patients needs?• How will you produce evidence of actual or anticipated benefits to service changes?• How can you demonstrate that your decision-making process is clearly communicated?• What strategy is in place for communicating difficult decisions?• How will you identity and provide support and skills within your pathfinder to improve patient and the public engagement? • How will you understand the local politics and ensure that this is managed effectively? How will you empower patients to care for themselves? • How will you develop promotion and education around self care, healthy living and management of long-term conditions?• How will you help patients and carers to understand what they can expect to receive in terms of care? e.g. access to details of care pathways and what should happen when?• How will you ensure the appropriate use by the public of GPs, out of hours, community pharmacy and other primary and secondary care services?• How will you work with other sectors (e.g. the voluntary sector) and community groups to encourage the active involvement of patients in their own care?• How will you work with all stakeholders to reduce health inequalities through greater public involvement?Further questions to consider:How will you ensure inclusion of patients, carers, public, communities of interest andgeography, health and wellbeing boards and local authorities?How does the CCG Analyse, and act on information from community engagement totranslate into priorities for improvement in services and outcomes?How will the CCG ensure the local/community voice of each practice population issought, and acted upon?How will the CCG show that views of individual patients are reflected in its plans?How will the CCG communicate a clear vision of the improvements it seeks to make inits local health population/local communities?Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Evidence for PPE - how will you demonstrate? (bearing in mind it will be assessed indocuments/desk based, in case studies and examples, and with a 360o exercise wherelocal stakeholders are engaged/asked about you):-(e.g. written, constitution, OD plan, prospectus, case studies, other evidence evidenceof impact, pdps, track records, what has been learnt, process review etc)and you will need to show:1. Capability• Already have?• Are actively building towards?2. Validity• Understand how this work is emerging, what you have learnt, what works, and why, what doesnt work etc.Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • Appendix 2NHS Patient Experience FrameworkIn October 2011 the NHS National Quality Board (NQB) agreed on a working definitionof patient experience to guide the measurement of patient experience across the NHS.This framework outlines those elements which are critical to the patients’ experience ofNHS Services. 1 !  Respect for patient-centred values, preferences, and 2 expressed needs, including: cultural issues; the dignity, privacy and independence of patients and service users; an awareness of quality-of-life issues; and shared decision making; 3 !   Coordination and integration of care across the health and social care system; 4 !  Information, communication, and education on clinical status, progress, prognosis, and processes of care in order to facilitate autonomy, self- care and health promotion; 5 !   Physical comfort including pain management, help with activities of daily living, and clean and comfortable surroundings; 6 !  Emotional support and alleviation of fear and anxiety about such issues as clinical status, prognosis, and the impact of illness on patients, their families and their finances; 7 !  Welcoming the involvement of family and friends, on whom patients and service users rely, in decision-making and demonstrating awareness and accommodation of their needs as care-givers; 8 !  Transition and continuity as regards information that will help patients care for themselves away from a clinical setting, and coordination, planning, and support to ease transitions; 9 !   Access to care with attention for example, to time spent waiting for admission or time between admission and placement in a room in an in-patient setting, and waiting time for an appointment or visit in the out-patient, primary care or social care setting. 10 Gateway reference number 17273Healthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92
    • This framework is based on a modified version of the Picker Institute Principles ofPatient-Centred Care, an evidence based definition of a good patient experience. Whenusing this framework the NHS is required under the Equality Act 2010 to take accountof its Public Sector Equality Duty including eliminating discrimination, harassment andvictimisation, promoting equality and fostering good relations between people.http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_132788.pdfHealthskills Ltd, 2-14 The Crescent, King Street, Leicester LE1 6RX t. 0800 652 3322 e. info@healthskills.co.uk www.healthskills.co.ukRegistered in England, no. 06656680. Registered Office: Stafford House, Blackbrook Park Avenue, Taunton, TA1 2PX VAT Registration no. GB 937 7253 92