A holistic and joined-up approach to change Person-centred care requires a holistic approach to secure change locally, supported by national enablers in the following three areas: – Supporting individuals to understand, appraise and apply health informati
A holistic and joined-up approach to change Person-centred care requires a holistic approach to secure change locally, supported by national enablers in the following three areas: – Supporting individuals to understand, appraise and apply health information; to be knowledgeable, skilled and confident in managing their health; and to be motivated to become active partners in their health and care. – Supporting health care professionals to recognise the need and to develop the necessary confidence, skills and knowledge to take on new roles and to work in partnership with patients. – Building alignment nationally and locally of measurement, processes, financial flows, guidance and regulation to support and encourage these new roles and relationships. This offers a framework, illustrated by the metaphor of the house of care,5 for system and professional stewards and regulators to both focus and test their activities. In addressing each of these areas, we need to recognise the interplay between an individual’s personal motivations, the cultural norms within their profession and place of work and the (small-p) political and policy drivers of local NHS systems. Alignment between these individual, social and contextual spheres will support the transformational change in practice that is at the heart of person-centred care. Policy and system stewards impact across these spheres. For example, education can inform an individual’s identity; payments systems focus managers’ attention on delivering some outcomes and away from delivering others; professional rewards have a similar impact; CPD can have little impact if it trains individuals in new behaviours and roles in isolation from their peers. Without strong alignment between system stewards in their purpose, policies and practice, we will struggle to achieve a positive and lasting shift to person-centred care. 5 The House of Care developed out of the Year of Care in Diabetes, with care and support planning at its heart. NHS England has developed a House at system level which puts person-centred care at its core. See: www.england.nhs.uk/house-of-care Supporting individuals The NHS invests heavily in developing a workforce with clinical knowledge. Yet it expects patients to take on shared decision making, care and support planning and self-management while providing little support to enable them to develop their capabilities to become partners in their own health and care. For people to share decision making and to self-manage more effectively, they need not only information but also motivation, confidence and skills to do so. Person-centred care: from ideas to action helpfully synthesises the current evidence about those interventions that are most effective in supporting people to take on a role in self-management and shared decision making, and the factors that can influence whether interventions are appropriate and successful. The evidence suggests that packages that combine different interventions work best both in increasing self-efficacy and leading to behaviour change. The report confirmed the findings from the Health Foundation’s two previous rapid evidence reviews.6 These found that proactive interventions or strategies to support selfmanagement and shared decision making were needed – information provision alone was unlikely to be sufficient to motivate ongoing shared decision making or improve self-management behaviours or clinical outcomes. Unsurprisingly, then, the interventions that are most effective are those that take such a proactive approach. These included: – group-based education and support for people living with long-term conditions – peer support – both based within NHS organisations and in the community – health coaching – by appropriately trained clinicians and by non-clinical health coaches. In addition, the voluntary and community sector offers skills, knowledge and capacity beyond the scope of mainstream services. This could unlock a new resource with the potential to train patients, moving us to scale more quickly. 6 de Silva D. Helping people help themselves. The Health Foundation, 2011. www.health.org.uk/publications/evidence-helping-people-helpthemselves de Silva D. Helping people share decision making. The Health Foundation, 2012. www.health.org.uk/publications/helping-people-share-decisionmaking See also www.nationalvoices.org.uk/evidence IN BRIEF: PERSON-CENTRED CARE: FROM IDEAS TO ACTION 7 Supporting professionals – The importance of professional identity. Clinical practice is driven by a desire to do good. The successes of clinical intervention underpin a belief in the ability of science and medicine to cure illness and disease. However, we may want to reflect on what to ‘do good’ means as society changes, as modern clinical practice provides multiple ways to address a clinical issue, and creates clinical issues that cannot be addressed, and as a growing proportion of the population live with one or more long-term condition. Professional bodies and others can lead their members in redefining it – perhaps as a duty to support patients to achieve the decision and goal that is right for them, perhaps expanding trainees’ early exposure to understanding what ‘good’ means for patients, and perhaps with greater use of patients as teachers. – The importance of practical training. One of the most common barriers in practice was a lack of recognition of the need to change. ‘We already do this’ has been found to be a common refrain among health care professionals attending training courses and puzzled when challenged that they do not practise person-centred care. The programmes examined in the research demonstrate the importance of practical training in helping clinicians recognise that they had not been sharing decision making or supporting self-management after all, and to become receptive to how they can do it better. – The importance of training teams. The research highlights the importance of training teams, not individuals. This means everyone will speak the same language, have the same understanding and be motivated towards shared goals: it provides the support infrastructure that enables learning to be translated into practice. This indicates the need for a significant acceleration in multi- or interprofessional training and team training as a far more normal part of development. – The importance of starting with clinical leaders. The hidden curriculum is a powerful force within the NHS. It is not enough to change education and training. Teaching the trainers, who role model behaviour in practice, first will have an impact on both current practice and the training of the next generation. It may also be necessary, in the short term at least, to use train-the-trainer programmes to rapidly expand the number of people able to train their peers. – The importance of new roles. Developing both the capacity and capability of new roles, such as peer workers, health coaches and care navigators who work within and alongside traditional services, highlights the demands of carving out a new training pool from within existing resources. This may lead us back to fruitful partnerships with the voluntary and community sector. The aspiration of Health Education England’s Framework 15 presents a significant challenge for professional bodies, the education and training stewards and the education sector. A shift in curricula and investment to build a workforce with the skills for the 21st century is needed, developing a workforce that feels as comfortable with shared decision making, selfmanagement support and care and support planning, as it does with clinical diagnosis, drug prescribing and dispensing, and monitoring patients’ progress. A supportive system A clear message from the programmes that have sought to embed and spread care and support planning, selfmanagement support and shared decision making is the importance of a whole system approach. If systems and processes do not support and align with changes at the individual and clinician level, change is unlikely to be sustained. This has implications for national policy makers and system stewards about how macro systems and policies need to align around a common purpose and goal if we are to have any chance of reaching tipping point in the spread and adoption of self-management support and shared decision making across the NHS. The Department of Health, through its role in setting the objectives for the arm’s length bodies and in holding them to account, has an important role in creating a clear focus on person-centred care in their priorities. Equally, in order for system stewards to design their policies, guidelines, inspections and incentives to support and enable shared decision making and selfmanagement support, their own workforce will need to be supported to develop the knowledge, understanding, skills and confidence to develop guidelines, to inspect and to design payment systems which start from the premise of a patient-, not provider- or professional-, focused NHS. 8 THE HEALTH FOUNDATION A shared purpose, understanding and language The way that the policy intents of government and system stewards are framed has a powerful impact on the actions that follow. We do not yet have the articulation of a coherent, consistent and clear vision of person-centred care which expresses a common understanding. The language of policy often projects a frame in which the health service still ultimately defines the purpose, parameters and practice of how far patients are ‘involved’ and may serve to unintentionally reinforce a paternalistic and impersonal paradigm in health care. This is perhaps understandable: as shared decision making and self-management support become more common currency, in conversation at least, they shift from abstract concepts to complex and nuanced constructs. They become messy. If we recognise this, if we seek to understand that our implicit assumptions and habitual behaviours may be grounded in a different worldview, then we can begin to collectively develop a narrative that conveys the true sense of a personcentred health service. This narrative will communicate the holistic approach and multi-layered web of activity necessary to make change happen – developing patients and clinician skills, introducing and embedding new roles and creating a supportive infrastructure. Shared decision making, care and support planning and self-management support shift the locus of power. This is a fundamental issue to grasp. In shared decision making and self-management support, patients engage services rather than services engaging patients; being ‘empowered’ means patients having the knowledge, skills and confidence to make decisions about and better manage their health rather than a measure of their adherence to professional directions and medical management instructions. Person-centred care and support is both the purpose and the means of delivering health services, rather than a bolt-on to what may otherwise feel like a clinically-driven, bureaucratically run service. Putting the person at the heart of regulation, guideline development and payment systems If we want to deliver value to patients, the four principles of person-centred care (see Figure 1) offer a framework for: – developing clinical guidelines – regulation and inspection – NHS payment systems. Guidelines NICE has an aspiration to put person-centred care and support at the heart of its approach. The challenge of shifting from single-disease focused guidelines to take account of multi-morbidities highlights the hard road that lies ahead in reframing the way that guidelines are produced. Building guidelines from a person-centred approach upwards is likely to be even more challenging. One tool that may help in this shift would be to test all new guidelines against a set of person-centred questions. For example: how do they support patients to manage their own health?; how do they support patients to make decisions about their own health care?; how do they respect the dignity of the person to whom the treatment will be offered? This might help refocus guidelines from clinical, disease-specific pathways, to person-centred pathways. Closer attention could also be paid to the potential for technology appraisals for enabling activities, such as group education and training. NICE could also explore the potential for embedding brief decision aids for shared decision making in clinical guidelines. Regulation Turning the aspiration of person-centred care into a programme of action offers a different set of challenges for the system regulators such as the CQC. Currently regulation is based around organisations; but people’s care often straddles boundaries between different health care organisations, and increasingly more widely. The regulators could root their inspection regimes around providers’ ability to demonstrate how they are enabling care and support planning, shared decision making and self-management support, for example, by how well organisations support people’s knowledge, skills and confidence to manage their long-term condition more effectively. IN BRIEF: PERSON-CENTRED CARE: FROM IDEAS TO ACTION 9 It will be challenging to identify organisations that are giving patients tests or treatments they would not want if they had greater agency over their health and care. Nonetheless, can a health care provider really be fit for purpose if it is over-intervening in people’s lives? The Atlas of Variation may be a helpful starting point for enquiry into the extent to which an organisation is oriented to patient needs and wants. The CQC already carries out thematic reviews in a number of areas such as end of life care and learning disability. A thematic review based on person-centred care might offer a baseline understanding of the personcentredness of organisations; developing the framework for the thematic review might also help tease out the questions and challenges of regulating for personcentred care and support. Payments, incentives and commissioning A strong theme to emerge from some of the Englandbased programmes examined in the research was the place of commissioning and payment frameworks in embedding collaborative care into mainstream practice. On the whole, these were currently seen as a barrier due to a model of payment that rewards activity rather than quality-oriented goals such as patients having the knowledge, skills and confidence to better manage their long-term condition or the agency to share in decision making. The annual cycle of the payment system and other incentives such as national CQUINs also made it difficult for people to invest in long-term change; something which we know is critical in this area. Monitor and NHS England have a difficult task ahead in shifting the incentive structure from activity- to outcome-based. An important question to continually bear in mind will be ‘What outcomes for whom’? A clinically successful knee operation is only a successful outcome if it enables the patient to better live the life they want to. Patient Reported Outcome Measures (PROMs) offer a way into thinking about outcomes, but such measures need to reflect the outcomes patients determine are important to them rather than to be a measure of the success of what clinicians or the system determines is important. It may be helpful to consider if payments for services could be based on outcomes such as: – improvements in patients’ knowledge, skills and confidence; – the extent to which patients’ preferences are being taken into account; – patients achieving the outcomes that are important to them. In addition, it may be helpful to think of questions, similar to those suggested in the section on guidelines above, against which new payments can be tested. Re-prioritisation of applied health research Self-management support and shared decision making are relative newcomers in applied health care research. Yet they could make a greater impact on health and well-being over the next 20 years than new drugs which add marginally to length of life. More work is needed to address questions such as: – What interventions work for which people in what circumstances? – How are brief decision aids best designed and effectively used in a consultation? – What person-centred care processes do we need to put in place in order to reliably bring about improvements in person-centred outcomes? – How do we measure those outcomes and use them to drive service improvements? – How do payment systems support or act as barriers to person-centred care? NIHR and other research funders have a significant role to play in drawing up and delivering a strategic research agenda for person-centred care. This can directly drive practice. It can also underpin the work of other system stewards, providing the foundations for guideline development, system regulation and professional education and training. 10 THE HEALTH FOUNDATION Where to from here? There is a growing recognition that the NHS cannot continue spending money on prescribing medicines people do not take, undertaking surgery that people wouldn’t choose if supported to make decisions in line with their preferences, or providing appointments for people with long-term conditions based on the convenience of the service but unrelated to individuals’ needs. Shared decision making and self-management support may or may not lead to cost savings in all areas of health care. But they should provide better value for whatever money is spent because they drive the NHS to address needs as defined by the people using health services – patients, service users, people with lived experience, clients, consumers or however we want to refer to ourselves – rather than provider defined needs. The commitment in policy statements by system and professional stewards and regulators is to be welcomed. But shared decision making and self-management support remain marginal in the practice of health care. The innovators and leaders who have demonstrated their impact in this area and who are operating in a new paradigm remain a minority. If their work is to become widespread, we need to translate the policy intentions into actions that will help drive and embed personcentred care in day-to-day health services. This will be hard work. Person-centred care is complex and it is novel within current care approaches. We lack the bedrock of experience and scale. The transformation to a personcentred care system will therefore require resources to support the types of activities suggested here. Without such practical, focused and forensic leadership, the gap between aspiration and reality will be as wide in 20 years as it has been for the past 20. The Health Foundation is committed to continuing to support this transformation. We are equally committed to working alongside the system and professional stewards and regulators who hold the challenging responsibility of creating the environment, laying the infrastructure, putting in place the incentives and building capability and capacity that will help close the gap between policy intent and practical reality. The Health Foundation 90 Long Acre London WC2E 9RA T 020 7257 8000 E This email address is being protected from spambots. You need JavaScript enabled to view it. Registered charity number: 286967 Registered company number: 1714937 For more information, visit: www.health.org.uk Follow us on Twitter: www.twitter.com/HealthFdn Sign up for our email newsletter: www.health.org.uk/enewsletter The Health Foundation is an independent charity working to improve the quality of health care in the UK. We are here to support people working in health care practice and policy to make lasting improvements to health services. We carry out research and in-depth policy analysis, run improvement programmes to put ideas into practice in the NHS, support and develop leaders and share evidence to encourage wider change. We want the UK to have a health care system of the highest possible quality – safe, effective, person-centred, timely, efficient and equitable
