People access health and social care in varying ways across the course of their lives including episodic diagnosis and treatment of illness and health conditions, and for support to manage their health and wellbeing.
The care needs of the UK population are changing as people are living longer and there is an increase in those living with: long-term conditions, multiple co-morbidities, physical and learning disabilities, and complex health and social care needs (Nuffield Trust, 2018).
For many people, this access results in extensive webs of care across a complex health and social care system (Nunes et al., 2011) comprising NHS providers of primary, secondary, tertiary and community care, local authorities, and organisations and services from the third sector and private sector.
The regulation, accountability, funding, and relationships within this system are varied and open to continual change. The constant element it is the people (patients, service users, carer(s), families and staff) who journey through and support others through this system, and live the experience ‘from the inside’.
Developed through extensive consultation with the public and NHS staff, the NHS Constitution (2010) establishes that people living in the UK should be provided with high quality care that is safe, effective, patient-centred, efficient, timely, equitable, coordinated across boundaries and delivered in partnership with other organisations (NHS Choices, 2018).
This multi-dimensional patient experience (Institute of Medicine, 2010) must be coordinated to support the health and well-being of individuals and improve population health through addressing inequalities and obstacles to the wider determinants of health (Charles et al., 2018, Ham, 2018).
This essay will explore patient-centred coordinated care (PCCC) and will focus on three critical components for its effective implementation. Firstly, people must receive care planning and support that is personalised, with inclusion in decision-making. Secondly, healthcare and support must be coordinated in new systemic ways that enable continuity in delivery within and across organisations and services. Thirdly, for improved patient experience, greater efficiency and improved value, this change requires compassionate and collaborative leadership that promotes inclusion and leadership by all.
None of these three components by themselves will deliver integrated care. They are inter-dependent and all three together are essential to tailoring health and social care to the needs and preferences of patients, their families and carer(s);and improving population health (Ham, 2018 and Charles, 2018). In discussing each component, obstacles to their implementation will be touched on to highlight the complexity of PCCC. As PCCC is so broad and complex, this essay’s focus will be narrowed to shared decision-making, self-management and involvement of patients, carers and staff.
Now to consider the literature.
There is extensive literature nationally and internationally on patient-centred care but no universally agreed definition (Redding, 2013). A working definition for patient-centred care is ‘responsive to individual personal preferences, needs and values and assuring that patient values guide all clinical decisions’ (Scottish Government, 2010).
The four principles for person-centred care described by The Health Foundation (2010) were:
1. Affording people dignity, compassion and respect;
2. Offering coordinated care, support or treatment.
3. Offering personalised care, support or treatment.
4. Supporting people to recognise and develop their own strengths and abilities to enable them to live an independent and fulfilling life.
These principles are evident in NHS Scotland “What Matters to you” campaign (NHS Scotland, 2018). This was founded on the challenge to staff providing health and social care to ‘stop seeing the patient and start seeing the person’ (Cornwall and Goodrich, 2008; Rodgers, 2013).
The theory of PCCC extends these principles to a system wide setting where a deliberate, joined up approach is undertaken; also referred to as integrated care (Wagner 2013).
Armitage et al. (2009) found that more than 175 definitions and concepts for integrated care. According to Shaw et al., (2011) there are variations on this term relating to the context of care provision such as patient and family-centred care (paediatric setting), client-centred care (mental health), resident-centred care (aged care).
Shaw et al. (2011) describe integration as the application of methods, processes and mechanisms to improve coordination of service provision (‘the means to an end’) from integrated care which is described as the organising principle for care delivery with the aim of improving patient care (‘intent’). This distinction importantly highlights the strategic intent of PCCC to benefit the health and social care system through reducing fragmentation, minimising duplication, disruption and discontinuity in order to improve patient experience and outcomes; and ensure continuity of care (Davies et al., 2011, Ham and Da Silva 2009, Stein and Reider 2009).
This first critical component of PCCC is that care planning and support must be personalised and incorporate shared decision-making.
For care to be personalised and delivered in a way that ensures patients are afforded dignity, respect and compassion, patients must be treated as equal partners in their care and enabled through co-production.
Co-production can enable application of principles of equality, diversity and access and support people to manage daily life in very practical ways for example, assistance with cooking at home rather than provision of ready cooked meals (SCIE, 2018).
From a service user’s perspective, the ‘gold standard’ of PCCC has been defined by National Voices (2013) as,
‘I can plan my care with people who work together to understand me and my carer(s), allow me control, and bring together services to achieve the outcomes important to me’.
Coulter et. al. (2011) signal the immense value of taking into account the ‘lived experience’ of episodes of illness, social circumstances, attitudes to risk, values and preferences. Upstein et al. (2010) propose that inclusion of a patient’s beliefs, hopes, symptoms, concerns and ways of dealing with adversity can support holistic and shared decision-making and bridge demographic, social and economic differences between those involved. Upstein et al. (2010) also suggests that meaningful interactions over treatment options, (especially in complex care situations) should include shared information, shared deliberation and shared mind (where consensus about an approach goes beyond consent).
Collins (2014) proposes that collaborative care and support planning, self-management support and shared decision making are meaningful ways in which PCCC can be implemented.
Shared decision-making (Bunn et al. 2017) is implemented through patients, carer(s) and health professionals working together to discuss and plan diagnostic tests, treatments, management, support packages and to consider social care outcomes, aligned with the patient’s preferences. This illustrates the saying ‘Nothing about me without me’.
Sir Chis Ham (Ham, 2018) highlights the importance of shared decision-making in reinforcing the patient’s responsibilities as well as their rights in using information to manage their health and well-being.
Coulter et al. (2011) however argue that shared decision-making may require cultural change as health care professionals must recognise the expertise of patient(s), carer(s) and families and adopt a partnership approach.
Individuals personalise episodes of care to their life, family and occupation (Willet, 2017) but levels of health literacy vary (Healthcare Improvement Scotland, 2015). Patients lacking the skills, understanding, confidence and knowledge to actively participate in shared decision-making may need help.
A number of co-production initiatives have generated useful resources such as patient decision aids (BMJ, 2013) and agenda cards to support shared decision-making.
It must be recognised, not all people have the capability, capacity or willingness to engage in shared decision-making. Nonetheless all those coordinating care for these people need to offer support. In many cases, people who are very frail, severely disabled, living with long term conditions or complex health and social care needs and those in intensive care units rely on others to advocate or negotiate care on their behalf (Bunn et al. 2017). In these circumstances, the responsibility is shared for the provision of compassion and respect and the protection of privacy and dignity.
The House of Care model for supporting End of Life care (Coulter et al. 2013) demonstrates the collaborative contributions of people, commissioners, health care professionals and organisational structures and systems, to personal care planning.
Supporting people to gain the knowledge, skills and confidence to manage their own health and care has implications for wider social value (Realising the Value, 2015). PCCC is needed to change population behaviours (Evans and Buck, 2018) and create ‘teachable moments’ (Flocke et al., 2014) .
Integrated Health and Wellbeing programmes such as OneSmallStep Devon; Kent:OneYou are examples where person-centred care is addressing single and multiple behavioural issues and reducing health inequalities within the population (Evans and Buck 2018).
Smith (2018) points out that many industries such as airlines and banking use co-production in service delivery and that the health industry is slower off the mark in both adoption and use of technology. The public in the UK today have high expectations of personalisation and are becoming more “technology savvy” (Willet, 2017). People are wanting to view their records, engage in healthcare digitally and becoming more comfortable in managing their health and wellbeing through ‘wearables’ (Healthtec, 2018).
This provides the UK and social care system with both challenge and opportunity.
The second critical component for the implementation of PCCC is the development of new ways of working across the health and social care system.
Walter Leutz’s (2009) three tiered model of integration (linkage, coordination and full integration) can be applied to consider the level of integration in the planning process or analysing outcomes of the partnership. This is consistent with Wagner’s (2013) view that integration is a characteristic of the environment. Shaw et al., (2011) suggest that regardless of the planned level of integration, alignment of goals and a shared vision are essential.
Within the health and social care system, integration should occur both vertically and horizontally. In vertical integration, a service provider could extend its scope of service provision up or down the ‘value chain’ (Fulop et al., 2005) – for example GPs with a special interest conducting ENT outpatient clinics in a tertiary hospital. In horizontal integration, clinical networks can review clinical pathways across services and organisations – for example The Royal Free London Group of Hospital Clinical Practice Groups. Both will benefit PCCC.
Shaw et al. (2011) have viewed integration from organisational, administrative, clinical, informational and financial perspectives. Nolte and McKee (2008) similarly, consider the type, breadth, degree and process of integration. This can be applied to the integrated care systems implemented already in the UK. Due to the variation in size, complexity, neighbourhoods, places and systems in which PCCC is occurring across the UK, Charles (2018) has described integrated care systems (ICS) as a journey, not an event.
PCCC remains at the forefront of the political agenda for health (Gov.uk. 2012; NHS England 2014; NHS England 2017; Health and Social Care Act, 2012).
Reports from significant failures and shortcomings in health and social care in specific organisations (Department of Health and Social Care, 2013) have had a broad and significant impact. These reports have assisted the public in understanding what went wrong, and what good looks like; and enables legislative and regulatory bodies, commissioning bodies, health and social care organisations to identify, understand and work towards addressing and preventing ‘wicked issues’ and systemic problems.
A vast literature evidences many ways in which PCCC is being strategically planned and delivered internationally and in the UK and highlights that there is no one national programme within the UK. Darzi (High Quality for All Report 2008) maintains the requirement for the NHS is to be universal with minimum standards and entitlements, not uniform. In this way through personalised care planning and support, people can receive help to live independent and fulfilling lives and to stay healthy.
Examples of PCCC in the UK include the Sustainability and Transformation Plans, designed to lead local care delivery; national programmes such as GIRFT, NSH Right Care and NHS Low Value Procedures. Internationally, Experienced Based Co-Design (EBCD), Communities of Practice, Quality Improvement and Lean are being embedded widely in healthcare.
The uniqueness of PCCC is the focus on outcomes rather than outputs (Redding, 2013). This can prove challenging within the NHS when there is such emphasis on targets such as A;E waiting times, cancer performance waiting times, referral to treatment targets.
These important measures must be complemented with measures of person-centredness for a holistic view on patient experience, sustainability, systems and partnerships, quality and ‘people’ measures, to support continuous improvement.
In the context of rising demand and financial pressure, the enduring challenge in the NHS is use of its resources and demonstrating value through balancing quality and cost (Jabbal and Lewis, 2018). A PCCC approach can also improve organisational performance, productivity and efficiency or enable cost avoidance. PCCC can reduce silo working within and across organisations and changes the provision of care from reactive to proactive (Shaw et al. 2011).
Obstacles to implementation can include a lack of alignment of payment mechanisms and incentives can cause further impact patient choice, increase competition or contestability. For example, redesigned care pathways reducing acute hospital admissions and average length of stay can create financial risks for organisations (Jabbal and Lewis (2018). Changes to funding policy and commissioning are needed to enable and support the outcomes delivered by PCCC.
Charles et al. (2018) argue that the focus of NHS Improvement and NHS England remains on organisational performance and accountability, references conflicting messages from NHS Improvement and NHS England as barriers to the implementation of integrated care and calls for one regulatory relationship.
Fulop et al. (2005) extended the four typologies for effective integration of organisation, service, functional and clinical to include normative (the role of shared values in coordinating work) and systemic (coherence of rules, policies and practices at various levels). This is important where PCCC programmes lack legal structure and dedicated financial funding (as is the case with many of the existing integrated care systems in the UK). . Without a legal basis, organisational and leadership ‘buy-in’, network governance, responsibility for policy making and delivery across organisational boundaries can be unclear and problematic (Newman, 2004). Integrated care systems and new care models need to be designed and owned locally (Charles et al., 2018).
The development of one integrated care system may cause fragmentation within the wider health and social care system or can have unintended consequences on other organisations and service providers (Charles et.al., 2018).
Following implementation of integrated care systems, partnerships and accountable care organisations there is a growing body of literature and context specific systemic reviews, on the implementation of integrated care systems in the UK and in more recent literature, its effectiveness (Davies et al. 2011. Addicott, R. 2015, Willet, E 2017, Wenzel, L., 2018, Timmons, N., 2018, Charles et.al. 2018).
A common theme amongst these reviews is the reliance on the importance of relationships and trust. Without any legal basis, many important health and social care collaborations, formally and informally, rely on the goodwill and willingness of leaders across organisations to work collaboratively.
The third critical component for the implementation of PCCC is compassionate and collaborative leadership that promotes inclusion and leadership by all.
Alderwick et al.’s (2015) Agenda for Action demonstrates how individuals, clinical teams, providers, systems, commissioners and national bodies can be active participants and co-producers of care.
West et al., (2014) maintain that the most important determinant of an organisation’s culture is the development and maintenance of leadership with Boards accountable for the design and delivery of a collective leadership strategy. Strong leadership is needed from Boards to wards, involving clinicians and managers to role model collaborative working and cultural shifts in attitudes and behaviours towards collaborative working (Dale and Lee, 2016). Bunn et al. (2017) point out that high-functioning relationships built on trust have a higher impact than contractual relationships.
Inclusive leadership is needed at all levels within organisations and services with individual and collective responsibility and genuine commitment for delivering safe, effective, high quality and compassionate care (West et al., 2014). People receiving care do not just want coordinated care nor do they want ‘skin deep’ personalisation (Redding 2013). Bailey (2018) purports that the relational aspects can be difficult and requires the investment of time, and commitment.
Obstacles to the implementation of PCCC can be cultural and behavioural as health care professionals may not recognise patients as assets (Da Silva, 2014). Some health care professionals are resistant to having lifestyle conversations, not seeing is as their place within the context of healthcare (Willet, 2017). Simeons and Scott (2005) purport that it is the internal motivators of individual health care professionals that are the catalysts for effective integrated working.
It is important that in planning and implementing PCCC leaders across health and social care consider opportunities to include patient leadership (Giles, 2018). Participation by patients, service users, carer(s) and families in activities such as pathway redesign may provider more meaningful information than quantitative data.
Unfortunately there are occasions where PCCC fails patients, carer(s) and families. Carefully planned and documented personalised care planning can be ignored during or after the transfer of care between organisations and services, impacting patient experience and quality of care (Greenwood, 2018).
This essay has highlighted the interdependency of the essential components of patient-centred coordinated care and discussed some of the obstacles for implementation. Personalised care including shared decison-making and patient-centred coordination needs to be integrated within and across organisations and services providing health and social care through strong, collaborative and shared leadership.
In this way, as put by Darzi (2008), we will ‘harness the renewable energy’ of people; and patients will remain at the heart of the NHS.