ppe paper for cc gs towards authorisation and beyond

PPE - A synthesis of perspectives for CCGs towards and beyond

authorisation

compiled by Jane Keep, Associate, Healthskills February 2012

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Contents:1. Introduction2. The Impetus - why bother with PPE?3. Where is PPE now?

a. New context old legacies - particularly in economic termsb. Clarity around the levels of PPE - collective and individualc. The language and meanings - of PPE

4. 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. governanceb. Patient Participation Groups (PPGs)c. staff/workforce engagementd. self managemente. patient participation, lay health workers, other PPE initiativesf. Personal health budgets and disability ‘right to control’g. the High street

14.Models15.Tools and Techniques16.References (and further information, more websites)Appendix 1. Diagnostic questions to ask as a CCG going forwards, towards and beyond authorisationAppendix 2. NHS Patient Experience Framework.

















PPE - A synthesis of perspectives for CCGs towards and beyond authorisation(Compiled by Jane Keep, Associate, Healthskills - February 2012)

1. Introduction

This 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, most of which have been taken from guides and papers about developing CCGs. It is not suggesting what is here written is ‘the way’ forward, more it is presenting some questions, challenges, ideas and options as to the way forward in supporting CCGs towards, and beyond authorisation. At the end of this paper is a list of some of the currently available resources and websites relating to engaging, empowering and involving. This paper is not about broader communications (or the media), although patient and public engagement (PPE) is part of communications. For the purpose of this paper the shortened term ‘PPE’ has been used, but as noted in this paper, there are many terms that could be used. The paper is not meant to be rocket science, nor a peer reviewed journal article. Just a collection of perspectives gathered in the last few months during the CCG work towards authorisation, as well as a number of observations 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 the Impetus, and then where PPE is now and some of the issues. Sections 4 - 8 highlight some specific areas related to, and part of PPE, Section 9 sets out things to consider going forward, and section 10 reflects on what makes PPE effective. Section 11 and 12 raise governance and ethics specifically. Section 13 through to section 16 offer websites, tools resources, models, and references. Appendix 1 suggests some diagnostic questions to ask/use to support the CCG towards authorisation, and Appendix 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 Outcomes Framework (2012) concentrates on two high level outcomes to be achieved across the public 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 expectancy and health life expectancy will enable the use of the most reliable information available to understand the nature of health inequalities both within areas and between areas’. These outcomes can only be achieved through working together with patients, the public, carers, and all of those involved in the delivery of healthcare.

Across much of the world participation is on the rise. In many economically developed countries, there is citizen participation on various levels - from involvement in decision making in individual episodes of care to public participation in policy-making processes and this is now formally mandated by policy. ‘Participation is seen as a means of both

















reconnecting disengaged publics with the decision-making process in an era of ‘democratic deficit’ (Pratchett 1999), and improving the quality of those decisions by taking account of a greater breadth of views, and creating greater understanding of the needs and wishes of the recipients of public services. ‘ (Martin 2009)

The current NHS policy context includes: the NHS Outcomes Framework; the NHS commissioning Framework; Information Strategy and choice consultation; Healthy Lives, Healthy People, the NHS Constitution, Section 242 - the Statutory duty to involve, Liberating the NHS - the White Paper and legislative framework ‘nothing about me without me’. The NHS Act 2006 places a statutory duty on all NHS organisations to involve patients and their representatives in decisions about services. Under the Health Bill’s proposals, all new commissioners are expected to have an approach to engagement in place before achieving authorisation by the NHS Commissioning Board. The NHS Constitution (‘The NHS belongs to us all’) sets out seven key principles that guide 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 on outcomes 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 money The 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;

















• 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 good governance to ensure that they are making decisions in the right way to secure the best possible services for the local community, they must also ensure everything is done in an open and transparent way in order to demonstrate to all those to whom they account, and in particular the public, that this is the case.

The NHS Future Forum emphasised these points in its report on patient involvement and public accountability:

“In a democratic country, with taxpayer funded public services, public accountability is vital to secure quality, integrity, value for money and public confidence. There has to be good governance at every level of the system, in every organisation dealing with taxpayers’ money, and amongst those individuals accountable within those organisations.”

As statutory NHS bodies, CCGs will be required to promote transparency at all times by:

• 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 responsible and accountable CCG with good governance will lead to good management, good performance, good stewardship of public money, good public engagement and our ultimate goal - good outcomes for patients (NHS Commissioning Board papers 2012). ‘Too often people who use public services are viewed as individuals with a set of problems that need to be solved. This perspective means that public services have often found it impossible to build and sustain the social networks of people who use these services.’ In Morris & Gilchrist’s (2011) early recommendations ‘commissioners of public services for example GP consortia/local authorities in charge of public health spending should specify social network related outcomes as well as more service specific outcomes. Morris & Gilchrist also cite that ‘commissioners should ensure that public services do not damage the networks of service users or reinforce isolation or loneliness. Instead public services should help to sustain and grow these networks’. And, ‘commissioners of public services should protect and utilise the positive assets that currently exist... not just buildings, but also assets of associations’. ‘Clinical commissioning groups will need to look beyond their practice lists in order to engage whole populations’ (NHS Confederation 2011)’

The RCGP (2011) cites the business case for PPI - ‘users of the service and their carers are most likely to identify safety failings in services and systems.’ (RCGP 2011:3)and that:

















• ‘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 often cited as - ‘effective PPE can lead to more patient-centred care, a greater sense of ownership among patients and moderated demand for healthcare resources.’ (NHS Confederation 2011), and, ‘I can think of no decision that has not been enriched and improved by patient engagement.’ (Homa 2011) ‘In Nottingham we are dedicated to creating more opportunities for patients and carers to both fulfill a more active role in their own care and also to share with us their ideas as to how we can improve our services.’ 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 influence commissioning decisions. ‘There is clear evidence that PPI can make real, constructive changes to the provision of services, aiding the responsiveness of practices and providing services that truly reflect what patients want and need. PPI also plays a key role in encouraging healthier communities, through the provision of information, advice and support to help local people lead healthier lives.’ (BMA 2011).

The quotes from policy papers are endless in their support to commit to and develop PPE to form a regular and systematic way of working in and around the NHS. But how much of this is rhetoric? What is the reality? Jeremy Taylor (National Voices, 2012) cites how often, PPE is mentioned in policy documents for example ‘we will put patients at the 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 me without me’. He also states ‘These words early on in the white paper ‘equity and

















excellence’ under the heading ‘putting patients and public first’ simultaneously sum up the White Paper’s fine intentions and muddled thinking about patients’. We know that Patient Organisations and patients themselves welcome the rhetoric, but are aware that such promises have been made before and that there is a continuing gap between the words and policy statements, and the reality.

Where is the patient, and public perspective on the ‘why bother’? why does it matter to them? ‘Ask any user of services what matters to them and they will have an opinion’ (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 right people (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) - this includes 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 ‘greater understanding of what their patients want so they can focus on what matters, and on improved reputation through recognition that patients have a positive experience, being the patients choice for care, delivering NHS values, enabling public accountability, and also for the efficient use of resources’ (BMA June 2011). There are also benefits for the NHS which include ‘strengthening public confidence in the NHS, and to society, when people are involved in and can influence decisions which directly affect their lives, their self 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 in connecting and acting as the intermediary for all the care patients receive. General practice connects patients with specialists, and it connects patients, carers, and their families with the broad range of support they need from both within the NHS and social care, most importantly, as trusted local community leaders, general practitioners have the ability to give a voice to the population of patients and communities they serve (DH 2011). The GP Patient Survey states that 88 per cent of their patients rate their overall

















experience with their GP practice as good; 93% of patients have confidence and trust in 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 of PPE whether through PALS, untoward incidents and complaints reporting, patient participation groups, surveys, local patient groups, the use of technology such as kiosks, and the internet, a mass of fliers, information packs, and a range of educational programmes including those building self management. In many cases there is also evidence and good practice of engagement through service reviews, service improvement, 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 been tried and tested, and the learning has been used to improve the way PPE is undertaken in and around the NHS. There is still evidence in places of ‘tick box’ approaches, and paying ‘lip service’ to developing real relationships, and true engagement. At the other end 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 paper some of these practices and case studies are shared and discussed. There are also a vast 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 principles about 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 also great at ‘wordsmithing’ and there is no lack of words written into policies, on organisational websites etc about PPE. The NHS more broadly, and locally has over the years implemented many PPE infrastructures, processes, approaches and policies, and some of these are already active processes continuing to be used, or being developed by CCGs. There is a legacy and some PPE ‘assets’ to build upon, as well as the passion and commitment for PPE by some too. So why if we have this proliferation of resource 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 of true practice in some areas? There are a number of reasons, some of which are discussed below.

a. New context old legacies - particularly in economic terms PPE really got started in the NHS in times of plenty, budgets, funds for service developments, and enabling patient choice came within a policy and economic time of plenty 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 with our all our ‘stakeholders’ and staff, service delivery teams, GP practices, needs a refresh. It needs a new clarity of expectations for all concerned based on what is

















possible given the climate and context now. It needs a re-imprinting recognising the old momentums of resource rich that are still at play, even down to the language we use in PPE, or in the way we describe services and what is actually on offer/possible. We also know that there just isn’t enough resource or funding to go around the whole of our population, particularly if the health and wellbeing of the population gets worse and demand increases. ‘in the next five years demand for healthcare will increase by around 20% mainly for long term conditions, yet over the same period resources will increase by only around 1%’ (Goodwin 2012), and people aged 65+ will account for 23% of the population. ‘Addressing this context has to mean a dramatic drop in demand for hospital 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 third sectors, and balance finance, quality and safety all at once ‘more management less leadership’ (Goodwin 2012). Some of the PPE will be about disinvestment, as well as supporting 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 touch and feel patients but the public is an intellectual abstraction’ (Jeremy Taylor, 2012). ‘The literature on patient involvement in health care distinguishes between participation in policy, service planning and evaluation on the one hand, and individual-level participation in personal healthcare on the other’ (Sinding et al 2011). In the day to day business of any CCG, there will be PPE on both collective and individual levels. In GP practices there will be the continuous opportunity for realtime feedback which can support increased responsiveness, and support quality and an ongoing momentum in service improvement. It also demonstrates commitment to service user satisfaction and public opinion. Patient involvement at a care practice level can carry many promises; it is a key to ‘getting the best health care’ and, it assures the patient an easier passage through care, and more effective communication with health professionals and informed (presumably better treatment choices). In the overall business of the CCG, in its commissioning and planning cycles, and, in resource allocation, as well as the development of new services, and the disinvestment of services, as well as the way the CCG ‘runs’, there is an ongoing need for PPE embedded into the CCG systems, and ways of working, rather than as an add on or tick box aspect to the business of the CCG. This includes the governance (mentioned below) aspect of running a CCG, as well as clinical audit. While it may seem obvious there are many different processes and tools that support PPE individually and collectively, and it is an important reminder as to the scale, purpose and focus of PPE as obviously different tools or approaches may be needed for collective, or individual engagement and relationships. Whilst many CCGs, and certainly GP practices have good practice, and pockets of PPE that works well, it is often not systematic, or consistent across the CCG.

c. The language and meanings - of PPE

One of the most common things that seems to get in the way of PPE is around language and meanings - the actual language, jargon and words used for PPE, and the meanings or mixed meanings behind PPE and the many variations in language and expression about what PPE is. This paper has been written using PPE as the consistent language, although as yet it has not clarified what PPE actually is.

















‘There are tensions both in the ideas of participation held by policymakers, and in the ways in which participation is realized by members of the public and state officials, managers and professionals which arise from different, even conflicting ideas about the purpose of participation, the nature of ‘expert’ and ‘lay’ knowledge and the relationships between professional providers of services and the public they serve (Martin 2009). ‘The anticipation of active citizens, self-governing communities or reflexive public participants in policy does not necessarily precipitate the emergency of such beings in practice’ (Martin 2009). ‘Power differentials between public participants and those within public-service organisations responsible for engaging with them mean that the terms of reference of participation become rather constrained’ (Martin 2009). It is not just related to the meanings of participation, or engagement, but around all aspects from notions of communication, information, involvement, collective, or individually, to the many acronyms that are used such as PPE, PPI, EPP, PLI and the many ‘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 of engaging 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 every policy change, and, whilst many can be heard to whisper the new terms, or use the key words for the current context, there is often a lack of shared understanding of those terms whether they be ‘modernisation’, or service improvement, or service quality, or even balancing the books, or patient safety. Too often assumptions creep in about what we are all talking about, and a muddle then occurs. ‘The slow escalation of involvement is in part because of the myriad ways in which it is conceptualised and discussed. Thus we conclude that one of the greatest barriers to truly integrating patient involvement into health services policy and research is the conceptual muddle with which involvement is articulated, understood and actioned e.g. its relevance to clinical practice, clinicians need to be supported to seek clarity in the use and operationalisation 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 involvement are used interchangeably within policy and practice without due recognition of the very different meanings and implications of public consultation, patient involvement in treatment decision-making and patient /carer involvement in service design and development (Forbat, Hubbard & Kearney 1999). ‘Wooly and imprecise language creates three kinds of risk. The first is the risk of false consensus, people think they are agreeing, when in fact they mean different things by the same worlds... the second is confusion... e.g. what exactly is putting patients first? the third is alienation, jargon like patient empowerment or PPI’ (Jeremy Taylor 2012). Whilst this paper doesn’t begin to unpick all of this, and to create or offer true meaning, or true definitions of the terms and the language, in the next few paragraphs there are descriptions of some of the potential meanings or terms.

There is a ‘spectrum of behaviours on a continuum (NHS Institute for Innovation and Improvement) - from informing (e.g. patients knowing what services are available and

















where to access); feedback (e.g. experience measures collected, analysed and improvements made as a result, and this insight is used in designing and assessing services); engagement (e.g. engagement in commissioning decisions, procurement, consultation as well as shared decision making whereby patients and carers are supported to engage in their own health care); co-design (e.g. effectively involving patients/family/public in redesigning care processes as equal and active partners); partnership (e.g. people actually contributing alongside professionals such as citizen led services).Engagement can be described as: ‘patient and public engagement is the active participation of patients, carers, community representatives, community groups and the public in how services are planned, delivered and evaluated. it is broader and deeper than traditional consultation. It involves the ongoing process of developing and sustaining constructive relationships, building strong, active partnerships and holding a meaningful 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 its patients to one which is patient-led where the service works with patients to support them with their health needs’ (Department of Health 2005)

PLI (patient led innovation) can be described as it involving the ‘innovating of existing products and services to meet the needs of patients and carers, by engaging with patients throughout an innovation-led design process’ (cpd4healthinnovation, School of Healthcare, Faculty of medicine and healthcare, Leeds University).

‘Patient satisfaction is the simplest interpretation and application of involvement and implies no action on the part of services to adjust practice, nor any indication of partnership or collaboration between patient and professional. ‘Forbat, Hubbard & Kearney 1999

Involvement can include - ‘where involvement is constructed as part of day-to-day practice, the model of patient as partner is invoked, with experiential knowledge as a driver - ‘the notion that involvement should be embedded into all practitioners’ roles is a core message in policy. however this is predicated on an understanding of what involvement is’ (Forbat, Hubbard & Kearney 1999).

Consumer engagement could be described as - ‘Consumer engagement at an individual level - patient carer involvement in decision making about their own care and treatment, or involvement in care practice, and includes patient centred care’ (Tere Dawson, 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. The central idea in co-production is that people who use services are hidden resources, not drains on the system, and that no service that ignores this resource can be efficient’ (RCGP 2011:9). Elke Loffler (Box 2 page 5) describes ‘distinctive principles of co-production• co-production conceives of service users as active asset-holders than passive

consumers



http://www.healthissuescentre.org.au

http://www.healthissuescentre.org.au















• 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 active citizens, taking care of our health, minimising unnecessary demands on the NHS’(Jeremy Taylor 2012).

Patients as partners - ‘shared decision making - shared means equal, equalising the power imbalance, doing medicine in a different way’ (Jeremy Taylor 2012)’

Shared decision making - ‘shared decision making - improving outcomes by changing relationships ‘about the relationship between clinicians and patients and changing the consultation experience so that both parties share knowledge, and expertise as equal partners and reach informed decisions about care and treatment, including the choice to manage their health themselves through self-management’ it requires a radical redesign of health care services, and changes to cultural perceptions of the public and retraining of clinicians’ (Health Foundation 2011). ‘Shared decision making is a process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patients informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties together with decision support counseling and a system for recording and implementing patients’ informed preferences.’ (Coulter and Collins 2011)

Patients as leaders - ‘The Centre for Patient Leadership will provide patients with the knowledge, skills and behaviours to become true agents of change. It will enable patients and carers to become effective and influential leaders in improving quality and promot ing hea l th ’ ( Inhea l th , Dav id Gi lber t and co l leagues - h t tp : / /www.inhealthassociates.co.uk/index.php/centre-patient-leadership/ )

People-powered public services - NESTA (2009) - genuinely empowering patients and clinicians to unleash innovative and cost effective ways of doing things, which takes advantage of the ingenuity and strength of existing communities... with innovation giving genuine power to front line staff, patients and the public....patient-centred redesign and prevention - properly understanding people’s needs helps design better services. - taking more account of the users of services, evaluating and redesigning services based on the input and participation of users, working closely with frontline staff.

4. It’s all about people & relationships

Whatever meaning, or language is used, there is a common denominator for instance with PPE, co-production, shared decision making, patients as partners,



people policy processes

http://www.inhealthassociates.co.uk/index.php/centre-patient-leadership/











communications, stakeholders and stakeholder development, clinical and workforce engagement, organisational culture, values and behaviours, leadership, governance, - the common connection is relationships amongst people. Many organisations particularly when going through large scale change overly focus on policy (or structure), and processes, rather equally focusing on people, processes/relationships and policy in equal 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 behavioural aspect nothing actually gets done, or the quality by which it is undertaken is away from the purpose, particularly given the NHS, and CCGs are service organisations. Service organisations, e.g. those in the public sector invest in consumer relationships, in customer service, and in people, those who work for them, and those they work for/serve.Fig 1 Its about making it people focused, and when people work together, or require services from one another, it is about relationships. People and relationship focused organisations. We spend very little time developing metrics, outputs, or even outcomes based on the development of people and the development and quality of relationships. Even the inputs for building relationships, and working with people can be mechanistic and 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 the emphasis placed on relationships or relationally based ways of operating.

5. Its not just about Patients and the Public

The 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 working arrangements. All staff will be empowered to put forward ways to deliver better and safer services for patients and their families’ and ‘to provide support and opportunities for staff to maintain their health, well-being and safety’. Staff engagement means different things to different people at different times in different places. Engaging all who work in the CCG will form part of the way forward for CCG’s. ‘A great CCG will have significant engagement from its constituent practices as well as wide spread involvement of all other clinical colleagues, clinicians providing health services locally including secondary care, community and mental health, those providing services to people 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 the health of the locality including population health’. If a ‘clinical perspective in everything the CCG does, with quality at its heart and an outcomes focus are part of CCG authorisation (Domain 1:a strong clinical and multi-professional focus which brings real added value) CCG’s will have a ‘responsibility to ensure that relevant health and care professionals are involved in the design of services and that patients and the public are actively involved in the commissioning arrangements’ (NHS Commissioning Board 2012). But recognising historically (this may not be the case now) that ‘getting GPs engaged in quality improvement can be a challenge, they may not respond well to



33%

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33%















improvement models or management consultancy-style improvements, and, peer to peer approaches are a good way to engage GPs and allow learning to spread out to a wider range of people.’ (Tongue 2011)

More generally, in terms of engaging everyone who works within the CCG there is a track record of staff engagement in the NHS, although variable in different organisations. GP practices have the benefit of often being small practices where most staff 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 feel they are involved in important decisions, consulted about changes that affect them, encouraged to suggest ideas for improving services, or feel their organisation values their work’ (Mooney 2011). The CIPD in its survey (2011-12) of all sectors and staff engagement found that 50% of respondents feel fully or fairly well informed about what is happening within their organisations but that satisfaction with the opportunity to feed upwards remains fairly negative’. In addition when looking at whether managers consult employees about important decisions ‘this is very low (-31%), the degree to which employees think managers consult with them has fallen to another record low’. Research shows that where staff engagement scores are high, scores are significantly higher for patient satisfaction and lower for standardised hospital mortality rates. Research also shows that where staff engagement scores are high, scores are also significantly higher for (good) staff health and well-being and lower for staff absenteeism. It is worth the effort in engaging all staff. High levels of staff engagement can lead to increased financial efficiencies as a result of a number of factors’ (NHS Employers) and, ‘in organisations that respect staff as an asset there is much more dialogue and transparency, and bad behaviours - whether by managers or staff - do not go unchallenged’ (Stevens 2012), ‘engagement creates a mutually beneficial long-term relationship between employees and employers. it is more enduring than satisfaction because it represents an emotional connection with the organisation that is likely to last through difficult times as well as good (Savitt 2011).

‘For organisations hoping to raise employee engagement the obvious starting point is to measure existing levels of engagement, and to do that they need to know what they are measuring and despite all the talk of engagement there is little agreement about what the term (employee engagement) actually means’. ‘It’s about attitudes and behaviour and relationships at work and positiveness and how you get that, and it happens to be called employee engagement at the moment’ (Purcell in Arkin 2011). At first instead of trying to get employees to support organisational goals and values it could make more sense 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 or restrict staff’ (Truss in Arkin 2011). ‘Clinicians need to be equipped and motivated to support people to use information and share in decision making about their health and healthcare choices, this is not just about adding a new set of clinical skills to the curricula, but about a fundamental change in what it means to be a health professional’ (Health Foundation 2011:5). An engaged member of the team (whether a GP, or practice nurse, or practice manager for instance) will be better placed to engage with those they serve (patients, carers, the public), as they will already have an engaging relationship with their practice or organisation, and understand what it feels like to be engaged.

6. Other stakeholders and relationships

















As well as engaging with patients, the public, carers, and the workforce, there are many other stakeholder and partnership relationships that CCGs and GP practices are engaging with, and developing new, or refreshing old relationships, all of whom provide potential support, and collaboration in the work of the CCG such as the Health and Wellbeing boards and local Healthwatch. Local authorities can offer; a democratic input and involvement, long-term investment in combating the social and economic determinants of health, extensive experience of commissioning a range of health related programmes, expertise in processes of consultation and engagement. Local police, fire, educational services will also have a lot of local experience in engaging the public. The Third sector e.g. relevant special interest groups, and voluntary organisations and charitable groups, will also have local networks, and, most local areas have an umbrella organisation that is in touch with the majority of local third sector groups and offers a simple way into collaborative arrangements. GP practices will already have a lot of existing arrangements and relationships that they can refresh and build on.

7. Information

It is worth mentioning information as this in itself has many factors to consider in relation 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 peoples knowledge and help them feel more confident there is sparse evidence that verbal or written information alone have a significant impact on shared decision making, so a range of information sources are useful.

Some other potential problems with using information to inform or engage are outlined below, 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 own

















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 enables people to take more control of their own care and enable shared decision making?’ (Health Foundation 2011). ‘There should be a clear and agreed purpose for sharing information with people, and it must be part of a wider strategy to change the patient/clinician relationship to enable people to take an active role in their own care’ (Health foundation 2011:4). ‘Health professionals must be actively involved in the development of information systems and requirements in order for information to support improvements in care’ (Health Foundation 2011:5). Being actively involved in the design of information solutions will encourage buy-in from the clinical and other workforce/teams working in the CCGs with support not only to measure and record data, also how to use information to improve quality, and improve relationships with patients and the public.

Equally, the way CCGs and GP practices deal with, collect, collate, analyse, synthesis patient generated information such as complaints is a vital resource, so information is a two way thing, it is not just about informing patients and the public, but about them equally informing CCGs and GPs of their experiences and feedback.

8. The Move Towards Self care/Self Management

As 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 around 20% mainly for long-term conditions, yet over the same period resources will increase by only 1%’ (Goodwin 2012), and given that people aged 65+ will account for 23% of the population ‘addressing this context has to mean a dramatic drop in demand for hospital emergency care and better managed primary-and self care’ (Goodwin 2012). ‘There is a growing - though not yet universal - understanding of just how much health care 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 different relationship between patients and professionals (Burns, Boyle and Krogh 2002:2). Equally, ‘we know that people with long term conditions can improve their health and have a better quality of life by taking a more active role in managing their own condition’ (Health Foundation Snapshot Co Creating Health 2011). There is policy

















support towards self management including ‘No decision about me with out me’ (NHS White Paper Equity and Excellence:liberating the NHS) which sets out that people with long term conditions should be engaged in making shared decisions about their own care.

Why bother? ‘Shared decision making is viewed as an ethical imperative by the professional regulatory bodies which expect clinicians to work in partnership with patients, informing and involving them whenever possible. It is important for patients because they want to be more involved than they currently are in making decisions about their own heath and health care’(Coulter & Collins 2011). ‘International evidence shows that involving people in their care and treatment improves their health outcomes, boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen health treatment. (NHS Institute for innovation and improvement 2011) ‘There is also compelling evidence that patents who are active participants in managing their health and healthcare have better outcomes than patients who are passive recipients of care. Shared decision making also important for commissioners because it reduced unwarranted 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, and opportunities for learning self management for patients whether it is locally in GP practices, or in other parts of the community such as larger establishments, hospitals, pharmacies, supermarkets. In addition there is evidence that more direct educational support such as the Expert Patient Programme for patients, and opportunities for patients to share their experiences and self management skills with one another supports and enables self management. Healthcare professionals may require support for a shift towards enabling self management, and a move away from the clinician as expert:• ‘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 knowledge

















(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 decision making self management support and personalised care planning. ‘We argue they are similar philosophies each requiring that clinicians recognise and respect the patients role in managing their own health. they also require advanced communication skills and the use of a number of tools and techniques to support information sharing, risk communication and deliberation about options. Shared decision making is appropriate for decisions about whether to: undergo a screening or diagnostic test, undergo a medical or surgical procedure, participant in a self management education programme, or psychological intervention, take medication, attempt al lifestyle change. ,which, at its heart, is the recognition that clinicians and patients bring different but equally important forms of expertise to the decision-making process’ (Coulter & Collins 2011). ‘Aujoulet, Hoor and Deccache (2006) found a number of consistent features associated with the concept of empowerment. One of the most important was that there were two dimensions to the process. First, there was an inter-personal dimension where empowerment was seen as a product of provider-patient interaction.’ (in Ellins & McIver 2009) where during communication power was given to the patient,’ second there was an ‘intra-personal dimension where empowerment was a process of personal transformation. Power was created within someone or latent power was released from within the self’ (Ellins & McIver 2009). Shared decision making ‘as a philosophy of care positions patients as equal partners in planning, developing and assessing care to make sure it is most appropriate for their needs’. It involves putting patients and their families 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 health budgets, care planning and decision aids’ (Health foundation 2011:7)On a practical note what 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)

















• ‘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 studies on line. They used three development and improvement programmes across the sites they worked with which included ADP - advanced development programme for clinicians; helping clinicians to develop the knowledge and skills to support people to self manage effectively, SMP - self management programme for people with long term conditions to support people to develop the knowledge and skills they need to manage their own condition and work in effective partnership with their clinicians, and SIP service improvement programme supporting people with long term conditions and healthcare professionals to work together to identify and implement new approaches to health service delivery that will enable people to take a more active role in their own health.

9. Things to consider going forward/setting conditions, building on assets

















Where do we start? ‘People can get mesmerised by the whizzy events, or technology etc, but its the day to day behavioural, cultural, and systems stuff that sustains, its about changing the way we relate to each other, and to those we serve’ (Gilbert Inhealth 2011). Any relational, behavioural, engaging or partnership and stakeholder activities require 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 top team, and the way the organisation, or GP practice is run, the principles upon which they are founded, and the daily operating principles which everyone works towards, it is about the way we do things, not the things we do, and for CCTs it is towards authorisation and beyond and not purely box ticking (NHS does that very well!). Many CCG’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 involving patients, the public, the staff/clinicians, and partners and stakeholders. It is useful to regularly ‘stock take’ on what works, what doesn’t work, what is being learnt about engaging and involving, self management, shared decision making, information etc, and which processes in the GP practice, or CCG support engagement, and which hinder engagement. Sometimes organisational processes and systems are counter intuitive to engaging. Additionally it is about reviewing what has been written, and what is actually being practiced/done as we can often have a gap of integrity where what is written is rhetoric and not actually acted out in reality even if it is perceived to be. One of the problems 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 shared decision making, or self management practices, or informative ways of working actually look 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 with feedback loops with those engaged, e.g. ask patients, the public, clinicians or staff what their experience has been, and why things have or have not worked in a certain way.

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 a

















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, or clinician, or managers perspectives, as this will enable participation or motivation to do PPE. For example the use of different questions, approaches, interests and perspectives may be required as not every member of staff will have the same level of interest 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 with the patient community served. there is an opportunity to think creatively about how to

















use these relationships to engage on wider commissioning matters beyond specific practice issues’ (NLC 2011). ‘The evidence from previous primary care commissioning (Smith and Goodwin 2006) is that larger primary care based organisations struggled to engage practices’ and CCGs need to ensure they are engaged actively with their GP practices. The RCGP federations toolkit suggests ‘getting practices to come together to create a shared vision, share ideas, skills, and provide opportunities for informal networking, as well as education in developing collaborative working ‘NAPC/KPMG) as a way of learning together, and sharing resources. ‘Engagement work can be undertaken at a ‘federated level’ across several CCG’s to make it cost effective - as well as locally, and building from the assets, processes and relationships and engagement that is already going on in your CCG, and practices.

Not everything needs to be engaged upon. There is a difference between tame and wicked issues in the daily work of GP practices and CCGs. Be clear when there is a need for shared decision making/engagement and when not - tame back stage organisational processes e.g. changing a light bulb, or ordering new pens do not need engagement. Wicked dilemmas bring people together to solve dilemmas and co-design solutions. Also consider what is needed back stage, & front stage in the CCGs and GP practices? what needs to be ‘shared’? ‘Clarity of purpose is also vital - people will not want to get involved in time consuming process unless they are clear about what they are setting out to achieve. Given that time, and resource is finite, PPE can build over time. Take time to consider where to start, or where to refresh, or continue to build based on what you have learnt, or know. Invest in key strands of patient engagement 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 to lead and work together on improvements. Try and test out, pilot, or use an example that works 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 of the service redesign, investment, disinvestment, as well as focusing on the systematic building of the necessary CCG or GP practice infrastructure e.g. organisational policies, culture, data systems, and daily working practices. This includes building on already systematic processes, statutory processes such as building on complaints, serious and untoward 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 on strategic planning, procurement and management are three broad activities and, strategic planning can benefit from whole health economy engagement in determining priorities for investment/disinvestment. Engaging, bearing in mind the processes relating to procurement laws - ‘procurement guide for commissioners of NHS-funded services recommends; ‘to get maximum benefit, engagement should be with both current and potential providers and take place as part of an ongoing exercise’. Getting PPE into the management of demand and performance can be challenging, but CCGs, and GP practices can capture patient experience, undertake complaints analyses, look at patient mystery shopping etc. Involving patients in clinical audit is another area CCGs and GP practices can consider, and build upon, in that ‘clinical audit must include patients. They, as well as clinicians, are the true professionals in illness.’ ‘the doctor may be highly qualified to diagnose and give treatment, however, only the patients truly know the pain, physical and psychological and the stress of their illness. the patient’s

















voice is so valuable as part of audit’ (Iain Thomas, MINAP representative, Member of the 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 - are we clear, do we have a common understanding? so as to create simple language amongst ourselves and our patients and the public and one that manages expectations and enables shared understanding, is educational, and names the dilemma, and, enables a language to talk about it if needs be. ‘Sharing information quickly and easily requires clear straight forward language. it requires thought, discipline and experience’ (Wrixon 2011). ‘Making a success of clinical commissioning will involve exchanging large amounts of information not only between those who are in on the jargon but also with patients and the public. If clinical commissioning groups are to communicate effectively they need to ditch jargon in favour of plain speaking.’ (Wrixon 2011) ‘impenetrable documentation obstructs progress. Not only does jargon slow things 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 no misunderstandings 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 be underestimated.’ (Stout 2011)

10. Ensuring PPE is effective

A 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 exactly do we mean by ‘best practice’? A key question here is ‘what does PPE mean - for us locally in context? what is our way? what is best practice in our context? There are many 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;

















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)

















• ‘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 ensure inclusion of patients, public, communities of interest and geography, health and wellbeing boards and local authorities in everything they do, especially their commissioning decisions. they should include mechanisms for gaining a broad range of views then analysing and acting on these. It should be evident how the views of individual decisions and how the voice of each practice population will be sought and acted on’. In summary emerging CCGs should be able to describe the arrangements they are putting in place to ensure they can effectively engaged with and gather insight from patients, carers, and public including disadvantaged groups and that the results of this engagement is reflected in the decision making processes for the CCG, including engagement throughout he commissioning cycle and in the major commissioning decisions, service improvement and service redesign, integration, as well as transparent governance arrangements that deliver local accountability, promoting choice through shared decision making’.

11. Governance

It feels important to highlight governance briefly here, in terms of public value, and what adds value to the public sphere, and governance forms part of this. One of the keys to this will be to identify with whom a (CCG) governance group needs to engage and for what purpose. ‘CCGs need to ensure there is a central group or committee that receives patient experience information from a variety of sources, including conversations, 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 to be open and honest with patients or their families when things go wrong ensuring they receive information about any investigations and encouraging the NHS to learn lessons. Being open with patients when something goes wrong is a key component of developing 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 to develop a culture of openness, which is part of how a ‘modern NHS should be - open and 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 be consideration of the level of responsibility for lay members on the CCG board and accountability, and the way they are rewarded, and, this would include transparent recruitment processes, not co-option as that will smack of cronyism and reduce credibility. ‘Unpaid volunteer basis for lay membership of boards is setting people up to fail and be ineffective’. There are ‘two sorts of lay members on boards governance- an

















insider role, keeping the board focused on the business, working with patients, public, and representational (e.g. Healthwatch) supra-PPG who maintains an outsider perspective (Gilbert Inhealth 2011). Voting and voting rights needs to be clear in job descriptions and role descriptions. ‘The elected board must include ‘at least two lay members - one of whom will lead on patient and public involvement, and the other will oversee key governance issues such as audit, remuneration and managing conflicts of interest’ (BMA 2012).‘The wide-ranging literature demonstrates that effective governance means giving priority to understanding the perspectives of key stakeholders - both internal and beyond the clinical commissioning group. Engaging effectively is an important way that a governance group and the CCG as a whole can demonstrate its openness, transparency and ultimately accountability’ (NLC (2011). Using lessons from complaints can, amongst other things, be a valuable way to influence improvement.

12. Ethics

There are also ethical considerations. The BMA (2011) state ‘it is very important that patient involvement is implemented well and that patients well being and dignity are defended. At present there is no national framework for PPI governance (including ethical committee requirement). This requires due consideration of the individual, providing information about what you would like those involved and engaged to do, and what you will do with the information, ensuring confidentiality. ‘Lay representatives or groups can be very helpful in working through tough ethical choices facing commissioners’ (RCGP 2011:3).

13. Websites, and other resources

This section offers some websites, approaches, models, and case studies (or places where case studies can be found). It does not specifically advocate any of these resources, 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 good practice. Having lay people on committees can profoundly change the nature of conversations’ ‘it needs to be made clear to the lay delegates on the committees that they are a gateway to other groups and individuals outside.’ they should be communicating with them and bringing their views to the table, you are not expecting them to represent all people. Most CCGs will have arrangements for paying lay representatives. there are examples of how this can be done. RCGP (2011) provide an e 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 how can patient representatives act as a proxy for other groups, can they represent the views of wider communities? how can they draw upon their own experiences to understand the wider dimensions of patient experience? - needs patient representatives who know the broad dimensions of what matters to the wider patient population, and knowing how to ask the right questions to ensure conversations, meetings and activities remained focused on patients.

b. Patient Participation Groups (PPGs):



http://www.nottinghamprincipia.nhs.uk

http://www.nottinghamprincipia.nhs.uk

http://www.nottinghamprincipia.nhs.uk/get-involved


















Recent changes to the General Medical Services contract from April 2011 require GP practices to promote the proactive engagement of their patients through ‘Patient Reference Groups’ and to undertake local surveys. N.A.P.P. has over 30 years experience and expertise in promoting, supporting and developing Patient Participation Groups (PPGs) and has developed a full range of resources that can support practices and PCT's in implementing this contractual Patient Participation requirement. Patient Participation Groups make an important contribution to the well-being of their communities. Their activities include health promotion, information provision, service delivery, fundraising and strategic input to the practice (Community Voices – Developing Virtual Patient Participation). PPGs can conduct patient surveys or collect feedback from patients in the waiting room, advise practices and patients of new service and treatments, share good practice with other PPG's, sit on recruitment panels for new staff including GPs, as well as producing a directory of self support groups, running courses within surgeries on health topics, raising awareness of public health messages

PPG 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-reality

c. 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 NHS Foundation Trust, St Georges Healthcare NHS Trust, Homerton University Hospital NHS Foundation trust, South Essex University Hospital Foundation Trust,Royal Bolton Hospital 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 report featuring multiple case studies and discussion of the wider evidence

Engaging with primary healthcare professionals to improve the health of the local population - http://www.psnc.org.uk/data/files/News_article_documents/LA_and_LRC_engagement.PDF

d. Self management:

http://selfmanagement.kyoh.org/what-is-self-management.html - Know your own health self management tools -KYOH is an online self-management service. Specifically designed to help people build up their confidence and capability to self-manage their health.



http://www.napp.org.uk/napp-projects/ppg-case-studies/




http://www.napp.o

http://www.napp.o

http://www.ehi.co.uk/news/EHI/6840/virtual-groups-make-involvement-reality




http://www.nhsemployers.org/EmploymentPolicyAndPractice/staff-engagement/Pages/Staff-Engagement-And-Involvement.aspx






http://www.bis.gov.uk/policies/employment-matters/strategies/employee-engagement




http://www.psnc.org.uk/data/files/News_article_documents/LA_and_LRC_engagement.PDF




http://selfmanagement.kyoh.org/what-is-self-management.html
















Treasure your wellbeing www.treasureyourwellbeing.org - design as an online tool to enable 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:goal setting, clinician - advanced development programme for clinicians; agenda setting, goal setting, healthcare system - a service improvement programme to embed self management 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 that benefits from insights from service users and recognises patents as people with resources. `the programme has already supported over 50,000 people to develop disease 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 capability

to self-manage their health.

http://www.carepages.com/ - CarePages websites are free patient blogs that connect friends and family during a health challenge

The Health Foundation Health foundation (2011) (3) can changing clinical-patient interactions improve healthcare quality? a scoping report for the Health Foundation December. Martin Fischer and Gill Ereaut - research on clinician-patient interaction

The Health Foundation: Self-Management Support Resource Centre. This resource centre is packed full of information and practical resources that can be adopted and adapted 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 be redesigned and commissioned to provide a personalised approach for people with long-term conditions.www.diabetes.nhs.uk



http://www.treasureyourwellbeing.org

http://www.treasureyourwellbeing.org

http://www.heath.org.uk/sms

http://www.heath.org.uk/sms

http://www.health.org.uk/cch

http://www.health.org.uk/cch

http://www.expertpatients.co.uk

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/








http://www.carepages.com

http://www.carepages.com

http://www.health.org.uk/resource-centre/new-sms/

http://www.health.org.uk/resource-centre/new-sms/

http://www.diabetes.nhs.uk/year_of_care/

http://www.diabetes.nhs.uk/year_of_care/















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 NHS Commissioning Board to make ‘no decision about me, without me’ a reality. February 2012

The 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 priority projects across the UK to test how to embed best practice and overcome the barriers to change.

Coulter, Angela & Collins, Alf (2011) Making shared decision-making a reality. No decision 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/ - personal health budgets pilots

Pain Toolkit - The Pain Toolkit is a simple information booklet that could provide you with some handy tips and skills to support you along the way to managing your pain. It is not meant to be the last word in pain self-management but a handy guide to help you get started - all you need to be is willing to read it and take on board some of the suggestions.www.paintoolkit.org

Health Talk Online is the award-winning website of the DIPEx charity. Healthtalkonline and its sister website, Youthhealthtalk, let you share in more than 2,000 people's experiences 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 patient participation - http://www.growingppgs.com/fileadmin/user_upload/other_pdfs/PCT%20Newsletter%20-%20final.pdf

National Association for Patient Participation - http://www.napp.org.uk

http://www.patientslikeme.com/ - patients like me PatientsLikeMe is committed to putting patients first. We do this by providing a better, more effective way for you to share your real-world health experiences in order to help yourself, other patients like you and organizations that focus on your conditions. is an online social network developed in the US for patients to share information with others that live with similar long-term conditions.

Support and advice is available from a large number of places and providers including the RCGP Centre for Commissioning, National Voluntary Groups and Organisations, SHA and PCT engagement and experience leads (until April 2013), Provider Trust Engagement and experience leads, Local Involvement Networks (LINKs) and Local



http://www.health.org.uk/public/cms/75/76/313/3293/Leading%20the%20way%20to%20shared%20decision%20making.pdf?realName=kWvz0K.pdf




http://www.health.org.uk/areas-of-work/programmes/shared-decision-making/




http://www.decisionaid.ohri.ca

http://www.decisionaid.ohri.ca

http://www.thedecisionaidcollection.nl

http://www.thedecisionaidcollection.nl

http://www.dh.gov.uk/health/category/policy-areas/nhs/personal-budgets/


http://www.paintoolkit.org/

http://www.paintoolkit.org/

http://www.healthtalkonline.org/

http://www.healthtalkonline.org/

http://www.health.org.uk/areas-of-work/programmes/co-creating-health/




http://www.growingppgs.com/fileadmin/user_upload/other_pdfs/PCT%20Newsletter%20-%20final.pdf




http://www.napp.org.uk


http://www.patientslikeme.com

http://www.patientslikeme.com















Health Watch, the National Association for Patient Participation, The National Association of Primary Care (NAPC) as well as www.institute.nhs.uk/engagementandexperience, and a Patient and Public involvement toolkit for doctors by the BMA

NHS Institute for Innovation and Improvement - the Rough guide to experience and engagement for GP consortia P 8 - 9

NHS Confederation (2011) Patient and Public Engagement in the New Commissioning Groups - case studies and a helpful table outlining common techniques used in engagement 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_113613

Lay health workers - http://researchonline.lshtm.ac.uk/12820/Lay health workers in primary and community health care. (NESTA 2009 - community participation 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 primary and community health care. Cochrane Database Syst Rev, CD0040 (1). CD004015. ISSN 1469-493X DOI: 10.1002/14651858.CD004015.pub2

h 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 r g . 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 health inequalities and improving outcomes

citizens councils - http://www.nice.org.uk/aboutnice/howwework/citizenscouncil/citizens_council.jsp

http://www.nhsconfed.org/Publications/briefings/Pages/Joining-the-conversation.aspx - case studies and briefing on social media and mental health services

http://healthandcare.dh.gov.uk/resources-pathfinders/case-studies/ - engaging patients case studies for pathfindersRCGP Centre for Commissioning - http://commissioning.rcgp.org.uk/

Closing the Gap Programme - Closing the Gap is our improvement programme dedicated 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 independent of any NHS organisation - its a valuable source of feedback - although there is extensive service user feedback, involvement, pals, complaints etc, patient opinion allows the organisation to hear actual stories of peoples experiences - including positive stories and opinions.



http://www.institute.nhs.uk/engagementand




http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113613






http://researchonline.lshtm.ac.uk/12820/

http://researchonline.lshtm.ac.uk/12820/

http://researchonline.lshtm.ac.uk/view/creators/12630.html




http://dx.doi.org/10.1002/14651858.CD004015.pub2

http://dx.doi.org/10.1002/14651858.CD004015.pub2

http://www.northern-consortium.org.uk/Page/QualityOfLife/Afootinthedoorpublication.aspx




http://www.nice.org.uk/aboutnice/howwework/citizenscouncil/citizens_council.jsp




http://www.nhsconfed.org/Publications/briefings/Pages/Joining-the-conversation.aspx

http://www.nhsconfed.org/Publications/briefings/Pages/Joining-the-conversation.aspx

http://healthandcare.dh.gov.uk/resources-pathfinders/case-studies/

http://healthandcare.dh.gov.uk/resources-pathfinders/case-studies/

http://commissioning.rcgp.org.uk

http://commissioning.rcgp.org.uk

http://www.health.org.uk/areas-of-work/programmes/closing-the-gap-through-changing-relationships/




http://www.patientopinion.org.uk
















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 to target areas of particular interest within adult social services. opinions are sought over a range of service areas to gain an understanding of service users’ views rather than measuring 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 people's experiences of over 60 health-related conditions and illnesses. You can watch video or listen to audio clips of the interviews, read about people's experiences if you prefer and find reliable information about specific conditions, treatment choices and support.

INVOLVE - Involve are experts in public participation. We believe passionately in a democracy where citizens are empowered to take and influence the decisions that affect their lives - http://www.involve.org.uk/

MAC partnership LLC - http://www.publicinvolvement.org.uk/ - developing user responsive organisations, supporting user and public participation - making sense of user engagement; involving users, carers and the public, developing user led commissioning, supporting lay leaders, using data as business intelligence

InHealth Associates -http://www.inhealthassociates.co.uk/Patient-centred management consultants. We provide advice and support for NHS and Third Sector organisations that focuses on what matters to patients. We promote the involvement of patients and the public in everyday healthcare practice.We provide strategic advice, organisational development and leadership support. We also run workshops, conduct presentations and seminars and undertake research.We work at all levels of the organisation, including Boards and senior management teams. All our work means engaging with partner organisations, clinical and non-clinical staff, patients, members of the public, patient groups, voluntary and community organisations and LINks.

Nat iona l Vo ices - People Shaping hea l th and soc ia l care - h t tp : / /www.nationalvoices.org.uk/

http://www.napp.org.uk/ - National Association for Patient Participation

www.pickereurope.org - Picker Institute Europe is a not-for-profit organisation that makes 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.



http://www.ic.nhs.uk/statistics-and-data-collections/social-care/user-surveys/personal-social-services-adult-social-care-survey-england--provisional-2010-11








http://www.healthtalkonline.org

http://www.healthtalkonline.org

http://www.involve.org.uk

http://www.involve.org.uk

http://www.publicinvolvement.org.uk

http://www.publicinvolvement.org.uk

http://www.nationalvoices.org.uk






http://www.pickereurope.org
















www.patientopinion.org.uk - Patient Opinion was founded in 2005 and since then has grown to be the UK's leading independent non-profit feedback platform for health services. Patient Opinion is about honest and meaningful conversations between patients and health services. We believe that your story can help make health services better.How it works:

1. Share your story of using a health service2. We send your story to staff so that they can learn from it3. You might get a response4. Your story might help staff to change services

public 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 principal focus is on scrutiny, accountability and good governance, both in the public sector and amongst those people and organisations who deliver publicly-funded services.

http://www.healthissuescentre.org.au/home.shtml - an Australian independent health policy research and action centre - ‘create meaningful and sustainable participation in your 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 through events, direct involvement in research and teaching, and other activities. We provide support for colleagues to share their work effectively and aim to stimulate discussion between 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 UK universities.http://www.publicengagement.ac.uk/

http://www.healthcare.leeds.ac.uk/enterprise/cpd4healthinnovation/patient-led-innovation.htm

http://www.scie.org.uk/publications/reports/report53-easyread.pdf - Towards co-production taking participation to the next level - Report

http://www.idea.gov.uk/idk/core/page.do?pageId=33548410Must-knows on health and wellbeing by the Improvement and Development Agency

Patient experience outpatient survey 2011 - Most patients rate NHS care good or excellent - Patients continue to report improvements in aspects of care that matter most to them, and 84 per cent of patients rated their experience as excellent or very good, according to the results of the 2011 Patient Experience Outpatient Survey. The





http://www.patientopinion.org.uk/YourOpinion

http://www.patientopinion.org.uk/YourOpinion

http://www.patientopinion.org.uk/Opinions#/?tab=1




http://www.dh.gov.uk/health/2012/01/public-health-outcomes/




http://www.cfps.org.uk

http://www.cfps.org.uk

http://www.healthissuescentre.org.au/home.shtml






http://www.bristol.ac.uk/public-engagement/

http://www.bristol.ac.uk/public-engagement/

http://www.publicengagement.ac.uk/

http://www.publicengagement.ac.uk/

http://www.publicengagement.ac.uk

http://www.publicengagement.ac.uk





http://www.scie.org.uk/publications/reports/report53-easyread.pdf

http://www.scie.org.uk/publications/reports/report53-easyread.pdf

http://www.idea.gov.uk/idk/core/page.do?pageId=33548410

http://www.idea.gov.uk/idk/core/page.do?pageId=33548410















results published show that more patients are being treated with respect and dignity and felt they were involved in decisions about their care and treatment and in the amount of information given to them about their treatment.Most patients rate NHS care good or excellent. Research links online patient feedback and hospital performance. Independent research linking patient feedback left on the NHS Choices website and objective measures of hospital performance has been published by Imperial College London. Better-rated hospitals tend to have lower death rates and lower readmission rates. Hospitals rated as cleaner by patients have also been found to have lower MRSA rates. The research is significant because it’s the first to link unsolicited patient ratings and objective measures of quality, signalling that online patient feedback may be more insightful and valuable than previously thought. The Government welcomes these findings, 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-performance

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_132788.pdf -NHS Patient Experience Framework- In October 2011 the NHS National Quality Board (NQB) agreed on a working definition of patient experience to guide the measurement of patient experience across the NHS. This framework outlines 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 patients and carers, by engaging with patients throughout an innovation-led design process. School of Healthcare

http://www.nhsall iance.org/member-networks/public-patient-involvement/?no_cache=1&tx_damfrontend_pi1%5Bpointer%5D=1 NHS Alliance Patient and Public Involvement group

http://www.hqip.org.uk/assets/PPE/HQIP-PPE-Guidance.pdf - PPE in clinical Audit - guide and case studies

f. 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 the support they need to go about their daily lives

Personal health budgets - pilots, central to the new policy direction for healthcare in England http://www.dh.gov.uk/health/category/policy-areas/nhs/personal-budgets/ Personal health budgets allow people to have more choice, flexibility and control over the health services and care they receive. At the heart of a personal health budget is a care plan, the agreement between the primary care trust and the individual that sets out the person’s health needs, the amount of money available to meet those needs and how 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 the support they need to go about their daily lives



http://mediacentre.dh.gov.uk/2012/02/14/patients-are-getting-excellent-or-very-good-care-in-the-nhs-but-more-needs-to-be-done/

http://mediacentre.dh.gov.uk/2012/02/14/patients-are-getting-excellent-or-very-good-care-in-the-nhs-but-more-needs-to-be-done/

http://www.dh.gov.uk/health/2012/02/patient-feedback/

http://www.dh.gov.uk/health/2012/02/patient-feedback/

http://www.networks.nhs.uk/networks/news/research-links-online-patient-feedback-and-hospital-performance




http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_132788.pdf




http://www.nhsalliance.org/member-networks/public-patient-involvement/?no_cache=1&tx_damfrontend_pi1%5Bpointer%5D=1




http://www.hqip.org.uk/assets/PPE/HQIP-PPE-Guidance.pdf

http://www.hqip.org.uk/assets/PPE/HQIP-PPE-Guidance.pdf

http://odi.dwp.gov.uk/odi-projects/right-to-control-trailblazers.php




















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 Taylor 2012)

What the NHS can learn from high street on patient feedback - (Guardian 2012) - ‘from in-store questionnaire to online surveys, giving feedback is an accepted part of our high street shopping experience. Retails dedicate a huge amount of effort and mooney towards finding out our views on every aspect of a visit to their stores because it provides managers with crucial information to make improvement that keep them ahead of their competitors... but in the NHS there is public and clinical suspicion that answering patient services is a fast tracy way to file unread feedback into a hospital and this perception needs changing... ‘too often hospitals create questionnaires that capture information that is useless in driving service improvements’... The retail sector is fully aware that to gather feedback is asking customers to donate their own time, so realises every second should be put to best use... questions must be geared to wards the things that matter for most customers, patients... and on areas that can actually be improved upon... retailers are wary of boring their customers, so too should the NHS be... the biggest challenge is turning data into meaningful actions... patients need to be treated as real-time data and not as material for a retrospective evaluation.. (e.g. not wait until the next board meeting) and the information needs to be acted upon immediately... staff at all levels need to be engaged with the feedback process, not just management... there is no shortage of opinions... and a wealth of patient data ready to be collected by the right questions and making use of the answers.

14. Models

There are many suggested models for PPE. David Gilbert from Inhealth Associates (2011) use a conceptual framework for PPE and offers a practical, sensible way for CCGs and GP practices. When looking at engaging at an individual level CCGs and practices can consider: ‘my say in decisions about care and treatment’ - information to patients about treatments (communications), feedback e.g. PALS, complaints; influence e.g. expert patient and advocacyWhen looking at engaging at a collective level - ‘our say in planning, design and delivery of services - information to citizens about services (communications), feedback e.g. patient experience data, consultation, trends in PALS, complaints data, LINKs, and influence e.g. representation and involvement in decision making (David Gilbert Inhealth)

Model of engagement in commissioning by David Gilbert of Inhealth Associates:-

















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 and plan (listen use data, agree outcomes, engage, involve), design pathways (respond CCG commissioning plan, and e.g. pathway design completed with patients), specify

















and procure (respond - patient-derived outcome measures, and third sector providers engagement), deliver and improve (monitoring, complaints, feedback etc)

A commonly used ‘model’ is Arnsteins ladder of participation (1969) (and there are many similar models - if you google Arnstein, or ladders of participation or related there are others too based on the same theme).

Amongst many other models, Forbat, Hubbard & Kearney (2009 table 1) - suggest ‘four models 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/empowerment

15. Tools and techniques

There is no lack of tools, experience, ideas, and a vast array of techniques and technology used for PPE. Are they all fit for purpose now? From the many tools and

















techniques and approaches that can be used all of which have their advantages, and disadvantages, and appropriate for different groups, or individuals and not necessarily one size fits all. Social media is a generic term used to describe a range of online applications that enable interactive communication between users, in contract with traditional media, participants can both consume and communicate information through social 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 include

informational 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 diabetes

Gauging 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• compliments

















• 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,

















• 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 Women's institute meeting)

• Citizens juries

















16. References (and some more websites):

AHMAD S, 2010, ‘Public engagement - why bother? Exploring the conditions under which 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/4177

Arkin Anat (2011) Is engagement working? People Management p22-27 November

Arnstein, Sherry R. "A Ladder of Citizen Participation," JAIP, Vol. 35, No. 4, July 1969, pp. 216-224

BENINGTON J, 2007, ‘From Private Choice To Public Value?’, Draft Chapter for publication in Benington J and Moore M (editors),2007,’In Search of Public Value – Beyond Private Choice’, Palgrave.PDF Downloaded 22nd September 2011 from: http://www.cihm.leeds.ac.uk/document_downloads/John_BeningtonPrivate_Choice_to_Public_Value.pdf

BMA (2012) Clinical commissioning group constitutions. General Practitioners Committee. January. GPC white paper no 15

BROWN H, 2009, ‘A guide to capturing and using patient, public and service user feedback effectively’. Birmingham: Health Services Management Centre (HSMC) and NHS West Midlands. PDF downloaded 22nd September 2011 from: NHS West Midlands guide...patient public and 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 the public 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_factor

CfPS (2011) Smoothing the way; developing local heathwatch through lessons from local involvement networks. Centre for Public Scrutiny

CIPD 2011-2012 Employee Outlook Survey Winter

Colin-Thome Professor David (2011) in dr foster. The Intelligent Board. September



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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. No decision about me, without me.The Kings Fund

Coulter Angela (2009) Implementing shared decision making in the UK: a report for the Health Foundation

Dawson Tere http://www.healthissuescentre.org.au/home.shtml

Department of Health (2004) Better information, better choices, better health. Putting information at the centre of health, London: DH.

DH Developing clinical commissioning groups: towards authorisation Developing clinical commissioning groups: towards authorisationDepartment of HealthPublished date:30 September 2011

DH (2005) Creating a patient-led NHS

DH (2011) Results of GP patient survey Department of Health December 2011

DH (2011) A more transparent and safer NHS for patients - implementing a ‘duty of candor’ will be a contractual requirement. 10th October

dr foster Intelligence (2011) The Intelligent Board - Intelligent Clinical Commissioning. September.

DUNSTON R, LEE A, BOUD D P, BRODIE AND CHIARELLA M, 2009, ‘Co-Production and Health System Reform – From Re-Imagining To Re-Making’, The Australian Journal of Public Administration, Vol. 68, No. 1 (March): pp. 39–52.PDF Downloaded 22nd September 2011 from: www.cihm.leeds.ac.uk/.../aupa_608_HR_co_productionAJPA_March1.pdf

Ellins Jo and McIver Shirley (2009) Supporting patients to make informed choices in primary care: what works? HSMC policy paper 4. May.

Feste, C. and Anderson, R. (1995) ‘Empowerment: from philosophy to practice’, Patient Education and Counseling, 26: 139-144.

Forbat Liz, Hubbard Gill, Kearney Nora (2009) Patient and public involvement: models and muddles. Journal of clinical nursing 18, 2547-2554

Guardian (2012) What the NHS can learn from high street on patient feedback - (Guardian 2012) January 27th

Gi lbert David of Inheal th Associates (2011) The engagement cycle. www.inhealthassociates.co.uk





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http://www.inhealthassociates.co.uk

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Gilbert David, Inhealth Associates (2011) ‘the Patient’s Dozen - what matters to patients and carers - a briefing paper

Gilbert David, Inhealth Associates (2011) Big change small steps. what does a patient engaged organisation look like and how do we get there?

Goodwin Neil 2012 Paper presented to a consultation exercise in NHS South in February 2012 (Exeter)

GREENHALGH T, 2009, ‘Patient and public involvement in chronic illness: beyond the expert patient’, British Medical Journal, Vol. 338, b.49 (14 March): pp b29-b31.PDF Downloaded 22nd September 2011 from: http://eprints.ucl.ac.uk/15561/1/15561.pdf

HAM 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.pdf

HEALTHCARE COMMISSION, 2009, ‘Listening, Learning, Working Together? A national study of how well healthcare organisations engage local people in planning and 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.pdf

Health Foundation (2011) Co-Creating Health: a self management support programme http://www.health.org.uk/areas-of-work/programmes/co-creating-health/

HEALTH FOUNDATION, 2011,’ Snapshot: Co-creating Health. Building New Relationships between People with Long-Term Conditions and a Supportive Health Service’, 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 improve healthcare quality? a scoping report for the Health Foundation December. Martin Fischer and Gill Ereaut

Health Foundation (2011) Helping People help themselves: a review of evidence considering whether it is worthwhile to support self management. May

Homa Peter (2011) On Hearing Voices 24th November p 21 Health Service Journal

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http://www.health.org.uk/publications/snapshot-co-creating-health/


















adherence’, Patient Education and Counseling, 61 (2): 173-190

HQIP, 2009, ‘Patient and Public Engagement(PPE) in Clinical Audit 2009’, London:Healthcare Quality Improvement Partnership. http://www.hqip.org.uk PDF downloaded on 22nd September 2011 from:www.hqip.org.uk/assets/Downloads/HQIP-PPE-Guidance.pdf (Iain Thomas MINAP representative, Member of the SW London Cardiac and Stroke Network quoted in HQIP PPE 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.html PDF Downloaded 22nd September 2011 from: http://www.govint.org/fileadmin/user_upload/publications/coproduction_why_it_is_important.pdf

London Pathfinder Toolkit Booklet Two: Roadmap

London Pathfinder towards authorisation 2011 appendix 3

MARTIN G, 2009b, ‘Public and user participation in public service delivery: tensions in policy 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).pdf

Mooney Helen (2011) Success is a team effort. 10th November p21-22. Health Service Journal

Morris David, & Gilchrist Alison (2011) Communities connected:inclusion, participation and 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.pdf N.B.[Interesting case studies for “Growing PPG Campaign” ALSO look at NAPPs “Ten Minute Guides: http://www.napp.org.uk/resources/ten-minute-guides/ and the Growing PPGs website resources: http://www.growingppgs.com/home/ ]

NAPC/KPMG (2011) Good governance for clinical commissioning groups: an introductory guide. (written by the Kings Fund)NHS constitution http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_113613

NHS Commissioning Board (2102) Towards establishment:creating responsive and accountable clinical commissioning groups. 2nd February

NHS Institute for Innovation and Improvement (2011) The Rough Guide to Experience and Engagement for GP Consortia.

NHS Confederation (2011) Patient and public engagement in the new commissioning system. Discussion paper. October. Issue 11



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http://eprints.nottingham.ac.uk/1142/1/Martin_(2009d).pdf








http://www.napp.org.uk/resources/ten-minute-guides/

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NLC (2011) A development tool to support emerging Clinical Commissioning Groups with their governance arrangements (National Leadership Council/NHS)National Voices - People Shaping health and social care (2011) Integrated care:what do patients, 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.pdf

PICKER INSTITUTE, 2009, ‘Patient and Public Engagement: the early impact of world class commissioning’, Oxford: Picker Europe (June).PDF downloaded 22nd September 2011 from:http://www.pickereurope.org/item/document/230

PICKER INSTITUTE, 2011, ‘The Patient Voice In Revalidation: A Discourse Analysis’ [A review of patient and public involvement in the development of the medical revalidation framework] authors: Helen Sheldon, Danielle Swain and Louise Harriss, Oxford: Picker Europe (February).PDF Downloaded 22nd September 2011 from: http://www.pickereurope.org/item/document/284

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Stevens Michelle (2012) Focus on employee engagement ‘could reduce tribunal claims’ People Management Magazine Online 3rd February

Stout David (2011) Get Everybody in on the action. Patient and Public Engagement. Health Services Journal. p26-27 27th October.

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Appendix 1 - Diagnostic Questions to ask as a CCG going forward, towards and beyond authorisation

Questions taken from The London Pathfinder Toolkit Booklet Two: Roadmap

Empowering patients and the public -‘How the pathfinder ensures that patients and the public are fully informed and involved in the promotion of their long-term health and the provision 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 the public are fully informed and involved in the promotion of their long term health and the provision 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?

















• 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 and geography, health and wellbeing boards and local authorities?

How does the CCG Analyse, and act on information from community engagement to translate into priorities for improvement in services and outcomes?

How will the CCG ensure the local/community voice of each practice population is sought, 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 in its local health population/local communities?

















Evidence for PPE - how will you demonstrate? (bearing in mind it will be assessed in documents/desk based, in case studies and examples, and with a 360o exercise where local stakeholders are engaged/asked about you):-

(e.g. written, constitution, OD plan, prospectus, case studies, other evidence evidence of 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 doesn't work etc.

















Appendix 2

NHS Patient Experience Framework

In October 2011 the NHS National Quality Board (NQB) agreed on a working definition of patient experience to guide the measurement of patient experience across the NHS. This framework outlines those elements which are critical to the patients’ experience of NHS 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 17273

















This framework is based on a modified version of the Picker Institute Principles of Patient-Centred Care, an evidence based definition of a good patient experience. When using this framework the NHS is required under the Equality Act 2010 to take account of its Public Sector Equality Duty including eliminating discrimination, harassment and victimisation, promoting equality and fostering good relations between people.




















