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Long read

Shared responsibility for health: the cultural change we need

In this long read we argue that one of the biggest challenges facing the NHS is cultural. Specifically, the relationship between the public and the NHS, and between patients and the staff who care for them, needs to be transformed. As well as ensuring that the resources (funding and workforce) needed to deliver care are available, national and local leaders must work to fully engage patients and the public in improving health and care.

The relationship between the public and the NHS, and between patients and staff, has been neglected for too long. The fully engaged scenario advocated in the Wanless report has not been realised, and there is a gap between the rhetoric of personalised care and the experience of many service users. The aspiration that people should be supported in making healthy choices has not been fulfilled, and there are rising concerns about the consequences for population health.

This long read outlines what needs to be done to bridge this gap, drawing on work under way in many places and moving beyond innovative projects to system-wide transformation. It builds on previous work by The King’s Fund on shared decision-making, patient activation and patient and public involvement in health care. It is also informed by the Fund’s work with patient leaders and leaders in the third sector.

The case for shared responsibility

Our central argument here is that there should be much greater emphasis on shared responsibility for improving health and care between patients, the public and the NHS. The cultural change we would like to see affects staff as well as patients because it requires staff to work differently in order to fully involve patients and the public in decisions about their health and wellbeing. By staff, we mean both clinicians who provide care and support and others working in public services.

Shared responsibility is not the same as personal responsibility, which places the onus on people to ‘look after themselves’ and ‘use services responsibly’. Our starting point is that most people already take responsibility for their health and care, but that more could be done to reduce overdependency on services and to draw on people’s own expertise. We acknowledge that it is easier for some people than others to assume more responsibility, which is why we argue that support is needed to make that happen.

Shared responsibility is also different from social responsibility for health. To be sure, the government plays a major role in tackling the wider determinants of health and wellbeing, as we outline in our new vision for population health (Buck et al 2018). The essential role of government is ‘the creation of healthy public policies and health-promoting environments, within which individuals are better able to make choices conducive to health’ (Minkler 1999, p 135). We argue that individuals need to be supported in making these choices by using the assets of communities as well as the formal health and care system.

The principal rationale for shared responsibility can be found in the changing disease burden in western societies. Medical advances have resulted in reductions in premature deaths from major killers such as heart disease, stroke and cancers. At the same time, increasing numbers of people are living with at least one long-term condition such as diabetes, arthritis, asthma and heart failure. Caring for these people makes up the bulk of the need and demand in our societies and calls for a different response from care providers. As research on the Global Burden of Disease has recently reported, the number of years of life spent with chronic poor health is now greater than the number of years of life lost due to preventable deaths (Steel et al 2018).

Where once the primary purpose of the health care system was to provide episodic treatment for people with acute illnesses, it now needs to deliver joined-up support for older people and others living with long-term conditions. It must also provide ongoing care for the growing numbers of people who have survived cancers and other major causes of premature death as a result of medical advances. Prevention as well as treatment depends on people playing their part in making healthy choices, for example in relation to rising levels of overweight and obesity in the population and preventing or delaying the onset and progression of chronic diseases.

Understanding that ‘the patient is the most important primary care provider’ (Sobel cited in Ham 2010) is essential to accelerate progress in the direction we have argued for. This simple insight is a reminder that the decisions each of us makes has a profound influence on our health and wellbeing. Making a reality of this insight by supporting patients to manage their conditions and to share in decision-making is long overdue.

The same applies outside health care narrowly defined where drawing on the assets of people and communities is essential, especially for people with complex needs who may not be well served by current services. Third sector organisations have often been more innovative than those in the public sector in doing so. This includes working with users themselves to find more effective ways of meeting needs, such as in the Life programme initiated by Hilary Cottam that has informed work in Wigan described below (Cottam 2018).

In a recent paper, the quality improvement writer and thinker Paul Batalden emphasises the limits of thinking of health care as a product and advocates in its place co-production based on trust and relationships (Batalden 2018). Attending to trust and relationships in every interaction between patients and the staff caring for them, as well as between the public and the agencies who serve them, must be the priority. This is the cultural change that is needed, starting from within the NHS and embraced by all involved in seeking to improve health and care.

The Institute of Medicine and Wanless

For some time, expert bodies have recognised the need to adapt to advances in the diagnosis and treatment of medical conditions, changes in the disease burden, the make-up of the population, and evidence of gaps in the quality of care. The Institute of Medicine’s (IOM) landmark report, Crossing the Quality Chasm, has influenced the planning and provision of health services around the world. It summarised the changes that were needed in the table below. The new rules proposed by the IOM included ‘The patient as the source of control’, which it contrasted with the then current approach of ‘Professionals control care’.

Table 1 Simple rules for the 21st-century health care system

Current approachNew role
Care is based primarily on visitsCare based on continuous healing relationships
Professional autonomy drives variabilityCustomisation based on patient needs and values
Professionals control careThe patient as the source of control
Information is a recordShared knowledge and free flow of information
Decision-making is based on training and experienceEvidence-based decision-making
Do no harm is an individual responsibilitySafety is a system property
Secrecy is necessaryThe need for transparency
The system reacts to needsAnticipation of needs
Cost reduction is soughtContinuous decrease in waste
Cost reduction is soughtCo-operation among clinicians

Source: based on

Soon after the publication of Crossing the Quality Chasm, the Wanless report on long-term trends affecting health care in the United Kingdom, commissioned by the Chancellor of the Exchequer, analysed the factors likely to have an impact on the resources required to deliver a high-quality health service. This report outlined three scenarios for the future, which varied according to the extent to which people became engaged in taking responsibility for their health. The most optimistic scenario assumed that the public were fully engaged, resulting in the biggest improvements in health and lowest increases in NHS spending among all the scenarios considered.

Advocacy of the fully engaged scenario in the Wanless report was based on analysis of changes in the disease burden in the population. As the report pointed out, future health care costs depended on progress in reducing risk factors in the population such as smoking rates, overweight and obesity. This in turn hinged on people accessing the support they needed to ‘make informed judgements about how to reduce their risk of ill health’. Wanless argued that there should be a new relationship between health professionals and the public ‘based on the twin planks of public and patient rights and responsibilities’.

As we noted at the outset, the fully engaged scenario has not been realised and there are growing concerns about the ability of the NHS to respond to the needs of people with type 2 diabetes and other long-term conditions that reflect, in part, their lifestyles and behaviours. Progress depends on doing more to support people to make healthy choices, as well as action by the government and the NHS to create the conditions in which they can make these choices.

The Chronic Care Model and shared decision-making

Arguments such as those put forward by the IOM and Wanless are based on the decline in deference to health care professionals, the rise of consumerism, and the opportunities to improve health outcomes and the quality of care by engaging patients and the public more effectively in decision-making. These opportunities are particularly important for people with long-term conditions, and have been recognised in the Chronic Care Model developed by Ed Wagner and work on the house of care model in the NHS. They are also relevant to people with acute and episodic conditions such as breast cancer and prostate cancer, as illustrated by the growing interest in shared decision-making between patients and clinicians.

Shared decision-making enables patients’ own preferences to be considered and may result in more conservative treatment decisions than when clinicians don’t involve patients. This is important in view of growing evidence of overdiagnosis and overtreatment, as highlighted in the BMJ’s Too Much Medicine initiative. The Choosing Wisely programme that originated in the United States seeks to improve conversations between patients and clinicians, in order to avoid 'too much medicine'. The ideas behind the programme have been taken up by the NHS in Scotland in its 'realistic medicine' approach and in Wales in its prudent health care policy.

Our research with the public shows that people see themselves as responsible for working with health professionals to make healthy choices and use services  appropriately (Evans et al 2018). As we have emphasised, responsibility should be shared between patients and the public on the one hand and health professionals on the other, because it is the relationship between the different parties that defines the essence of health care. Wagner’s Chronic Care Model in its updated version expressed this as the interaction between a prepared, proactive practice team and an informed, empowered patient and family.

The Chronic Care Model

The Chronic Care Model

Source: Developed by the MacColl Institute © ACP-ASIM Journals and Books

There is good evidence for people taking greater responsibility to manage their own health where they have the capabilities and motivation to do so. However, this must go hand in hand with equipping people with the knowledge and information that will support them to do this. It also requires recognition that improving health and wellbeing is far easier for some individuals and communities than others, as demonstrated by work on patient activation (Hibbard and Gilburt 2014).

Putting shared responsibility into practice requires people to be offered support tailored to their needs, preferences and level of activation. A recent study found that patients who are most able to manage their health conditions have, on average, fewer emergency admissions and fewer A&E attendances than those who are less able to do so (Deeny et al 2018). There is also evidence that higher levels of activation are associated with better patient outcomes (Hibbard and Gilburt 2014).

Ways in which patients and the public are becoming more involved

A wide variety of examples showing how patients and the public are becoming more involved have emerged as a result of local initiatives and national policies. We now outline some of these examples and the evidence of their impact. The most recent NHS strategy, the NHS five year forward view (Forward View), argued that much more needs to be done to draw on what it described as the renewable energy of people and communities, but progress in converting this aspiration into action has been patchy at best.

Self-management support

People living with long-term conditions spend only a small proportion of their time in contact with health and social care services. For most of the time, it is their own capabilities and resources that determine how effectively their health is managed. Building on the work of Kate Lorig and others, there is good evidence that people who recognise the importance of self-managing their condition and have the skills, knowledge and confidence to take on this role, experience better health outcomes (Coulter et al 2013; Greene and Hibbard 2012).

Structured support and education can be highly effective in developing and strengthening these skills, even among those people who are initially less confident, less motivated or who have low levels of health literacy (Hibbard and Greene 2013). This might involve access and support to attend structured education programmes, such as the DESMOND programme for type 2 diabetes, or generic self-management courses such as those run by Self Management UK (which continues work started under the Expert Patients Programme). There is also a growing role for digital technology in supporting self-management of long-term conditions, including through apps such as myCOPD.

Health coaching and personalised care planning

People living with long-term conditions need not only the right knowledge and information to effectively manage their health, but they also require confidence and a sense of empowerment to do so. There is evidence that health coaching can support self-management and behaviour change, although evidence of its impact on physical outcomes is mixed (Health Education England and the Evidence Centre 2014). Goal setting has to recognise that for patients with multiple health problems functional status and social participation may matter more than clinical targets (Watt 2013).

Personalised care planning is a process through which people with long-term conditions and their carers work in partnership with health and social care professionals to identify their care needs, based on their own strengths, goals and priorities. A decision coaching process is then used to set goals, action plans and a timetable for review. Involvement in care planning has been shown to improve people’s confidence and skills in managing their health (Realising the Value 2016).

Information sharing

For people to take a greater role in managing their own health and care, they need to have both access to and understanding of information pertaining to their health. This is true both for individuals who are generally fit and healthy and have infrequent interactions with health services as well as for those living with long-term conditions. There is evidence that online access to records is highly valued by patients and that it can lead to improved communication and adherence to lifestyle advice (Imison et al 2016).

Peer support and education

Much of the knowledge and expertise required to self-manage long-term conditions is not held by professionals, but by people with experience of the condition. Peer-based approaches can be a powerful tool in building people’s capabilities to manage their health. These approaches can take a range of forms, including online networks, group-based peer sessions and peer tutor programmes.

There is evidence that peer support programmes can improve clinical outcomes by enhancing people’s skills and confidence to self-manage. Research has also found benefits to peer supporters and their ability to manage their own conditions (Ejbye and Holman 2016). People with first-hand experience of a mental or physical health condition can also play a vital role in educating professionals. This requires a shift in the prevailing view of the professional as the expert, to one where both patients and professionals recognise and value the skills and expertise that they each bring.

Designing services in partnership

People using services can play an important role in shaping or leading the design of the services they use. This can take a variety of forms, including having patient leaders on system redesign boards, running co-production workshops with members of the public or using specific methods such as experience-based co-design. Through these approaches, services can be improved to better suit people’s needs and preferences, helping to improve the experience of those using them.

Patients as leaders

The potential to shift the nature of relationships between services and service-users is further illustrated by the growing role and influence of patient leaders in the health and care system. There are well-established examples of patient leaders working at both a local and national level to drive change and improvement, support greater collaboration and hold services to account (The King’s Fund 2013). This requires a fundamental shift in the power dynamic between patients and professionals towards ‘a dialogue of equals’ (Gilbert and Doughty 2012) and the development of capabilities for collaborative working and leadership (Seale 2016; National Voices 2012).

Personal budgets

Personal budgets shift the control of resources for health and care services to people or their carers and families, allowing them to choose from a wider range of care and support options tailored to their individual needs and preferences. There is evidence that this can improve quality of life and psychological wellbeing, and that they can be cost effective, particularly for those with complex needs and for individuals with mental health problems (Forder et al 2012). Social care personal budgets have been linked to improvements in quality of life for both budget holders and their carers (Realising the Value 2016).

Shared decision-making

Shared decision-making involves clinicians and patients working together to make decisions about treatment, tests and support options, drawing on both clinical evidence and the patient’s informed preferences. This process involves the provision of information about options, including the risks and benefits of each, decision support counselling, and the recording of the patient’s preferences. There is evidence that involving people in decisions about their care can lead to higher levels of satisfaction and improve treatment concordance (The Health Foundation 2012; Coulter and Collins 2011).

The role of carers and families

For many people living with long-term conditions or ongoing care needs, carers and family members play a key role in supporting them to stay healthy and well. There is evidence that greater involvement of families and carers can improve outcomes and experience for patients, carers and staff (Foot et al 2014). This may involve efforts to support carers to develop knowledge and skills in their caring role and to create closer partnerships between carers and health professionals.

Working with communities

Shared responsibility matters for communities as well as individuals, with area-based communities typically founded on partnerships between public services and the local population. The role of communities in improving health is receiving increasing, and long overdue, attention in health policy and practice (Buck and Wenzel 2018). The Wigan Deal seeks to make explicit the basis of partnerships in a way that echoes the thinking behind the Wanless report. This deal has emerged through dialogue between Wigan Council and residents in which the emphasis has been placed on listening and responding to residents' concerns.

Wigan Council’s Deal for Health and Wellness

Wigan Council’s Deal for Health and Wellness

Source: reproduced with permission of Wigan Council

Social prescribing is a means of enabling GPs, nurses and other primary care professionals to refer people to a range of non-clinical services and is one way of addressing concerns about over treatment and ‘too much medicine’. Examples include arts activities, cookery, gardening and a range of sports aimed at addressing people’s needs holistically. Promising results are emerging from some schemes (Imison et al 2017; Dayson et al 2013; Kimberlee 2013), however robust and systematic evidence on the outcomes and resource implications of social prescribing is limited (Bickerdike et al 2017). [Researchers have highlighted]( briefing_social_prescribing.pdf) the challenge of measuring the outcomes of complex interventions and making meaningful comparisons between very different schemes.

Making a reality of cultural change

The examples described above illustrate how work is under way to involve patients and the public in seeking to improve their health and care. The challenge now is to go much further and faster in extending and deepening this work in order to make a reality of the cultural change we are advocating.

If this is to happen, there must be a credible commitment by the government and by national NHS bodies to involve patients and the public. Professional associations and organisations representing the views of patients and the public can also provide leadership. Even more important are the changes required in the NHS, drawing on the assets of patients and communities and other public agencies such as local authorities.

A common characteristic of many of the examples we have described was recognition by patients, health care professionals and others that changes were needed. The actions that followed reflected dissatisfaction with the status quo and understanding of the possibility of more effective alternatives. Leaders of different kinds – patient, clinical, and managerial – took the initiative to explore these alternatives and to question assumptions that were taken for granted.

The strength of this approach is the ability to put in place ways of working tailored to the needs of different services and communities. Its weakness is that, for the most part, change occurs in pockets of innovation rather than across the whole health and care system. Now is the time to understand why this is the case and ask what needs to be done to create a social movement around shared responsibility in its many different manifestations.

The imbalance of power between patients and staff, and between people and the public agencies who serve them, helps explain why change has been slow. Professional dominance in health care often works against shared responsibility and is compounded by the shortage of time and resources to enable staff to work in partnership with patients. Making a reality of shared responsibility is hard work that is not made easier by lack of support to do so.

Public agencies have been slow to rethink their relationship with the communities they serve. Cottam argues that the new public management culture that has pervaded public services has neglected the critical importance of the assets of communities and the importance of doing things with people and not to them (Cottam 2018). The examples she cites of places that have developed more effective ways of meeting people’s needs – including Wigan – seek solutions by listening to what matters to people and accepting the discomfort that may result, and by understanding why relationships are fundamentally important.

Cottam's thinking has informed the arguments set out in this long read and is echoed in other work on the changing nature of power in contemporary societies (Heimans and Timms 2018). Areas such as Wigan and Frome show – knowingly or unknowingly – how new power values are helping to shape different ways of delivering public services by working with people and communities to meet their needs more effectively. The challenge is to encourage other areas to learn from their experience by creating the conditions for growth rather than by seeking to spread and scale innovations in a linear manner (Cottam 2018, p 243).

Old power values and new power values

Old power values and new power values

Reproduced from Heimans and Timms (2018)

How this might be done is illustrated by recent experience in the NHS in developing new care models and integrated care systems. In both cases, national NHS bodies set out a broad framework that allowed an unusual degree of freedom and flexibility for leaders and staff at a local level to find solutions. They also encouraged areas to collaborate through communities of practice in order to enable learning to be shared and problems to be solved jointly. Peer-to-peer support provided an alternative to change being mandated through old power methods such as national plans and policy documents.

While it would be an exaggeration to describe these developments as a social movement, they indicate how such a movement might emerge. Some of the new care models and integrated care systems also illustrate the growing appetite for looking beyond the health care system narrowly defined to the wider determinants of health and wellbeing. The leadership of local authorities in some areas, and the involvement of the third sector in others, shows how multiple forms of resource are already being used in pursuit of this aim.

In emphasising the role of leadership in the NHS and among partner organisations, we fully recognise the role of government. This includes central government using its powers to challenge the forces that shape people’s behaviours through regulation, legislation and other means, as we describe in our new vision for population health (Buck et al 2018). Local government also has a role in using its powers to create healthy public policies and health-creating environments, learning from the experience of city governments around the world (Naylor et al 2018)

Educational institutions also have a major role in supporting the developments we are advocating, especially those affecting patients in their interactions with health care professionals. The training of the workforce of the future must prepare professionals for a world in which shared responsibility is the norm and not the exception. This means inculcating skills in listening to patients, motivating them and understanding the degree of activation they bring, as well as promoting teamworking. Professional associations need to provide leadership in promoting these changes.

It also means providing training, support and time for existing staff to work differently. This will not be easy given the pressures on the health and care system and increasing staff shortages, but it is essential if partnership with patients is to be realised. As the NHS five year forward view noted, people and communities are a huge source of renewable energy, and much more needs to be done to harness this energy in pursuit of better outcomes.

Digital technologies are already supporting patients and people to play a big part in improving their health and care. Online patient communities such as Patients Like Me, apps that enable people to monitor their health and nudge them to make healthy choices, and online access to health care records are all examples. The positively disruptive impact of these technologies could make an even bigger contribution to the cultural change that will be needed in the future.

Patient leaders and leaders in the community and voluntary sectors should be at the heart of these changes. Our work at The King’s Fund with some of these leaders demonstrates the contribution they are already making and also the hurdles they face in challenging entrenched ways of working and paternalistic attitudes. Determined social activists and entrepreneurs such as Victor Adebowale, Hilary Cottam and Andrew Mawson, who led the development of the Bromley-by-Bow Centre in east London, have a vital part to play in finding innovative approaches to meet needs.

In this context, it is heartening that some senior leaders in the public sector are now arguing for changes of the kind we are advocating. In a recent speech, Andy Burnham, former Secretary of State for Health and now Mayor of Greater Manchester, outlined his vision, which included cultural change in public services. Specifically, Burnham called for public services to see the whole person, not the problem or condition, to think social before medical, and to develop a new relationship with the community and voluntary sector to deliver that vision. He also argued for a new deal for carers in recognition of the critical role they play in improving health and care.

We would reiterate, as a last word, that the most important cultural change is in the relationship between patients and the health care professionals who care for them. For this to happen, all involved must fundamentally change their behaviours and attitudes by moving to genuine partnerships in which patients and professionals engage with each other as equals. Other public services must transform their ways of working too, involving people and communities and drawing on all the assets that exist. New power and old power both have a contribution to make.