Data-driven,integrated primary and secondary care for children: moving from policy to practice

This article is in our series on health policy

Despite the best efforts of clinicians, traditional healthcare models often struggle to meet the increasingly complex needs of children and young people under the age of 18 years, as well as 21st century challenges such as obesity and mental health problems. Policy makers and clinical leaders have argued that greater integration of primary and secondary care has the potential to meet the ‘Quadruple aim’ of better population health outcomes, patient and family satisfaction, provider satisfaction and reduced costs. ¹ More integrated services and improved data sharing across organisations are key enablers of child health improvement. However, there is sparse literature on how more integrated care for children and young people might work in practice or contribute to achieving these goals. We present the experience of developing a new model for integrated care delivery for children and young people in North West London, based on a common system of clinical records or dashboards across all providers. It includes case studies that illustrate the development of strong relationships and shared learning experiences between primary and secondary care.

The case for change to improve child health outcomes

Although there has been overall progress in the health of children and young people over the past 20 years, the UK has fallen behind other wealthy countries in Europe.^2,3 Furthermore, the infant mortality rate, one of the key measures of the health of a population, has begun to rise after a century of continuous improvement. ⁴ We also compare poorly with other countries in terms of childhood obesity, long-term conditions and asthma deaths. ⁵ Asthma is the most common chronic disease of childhood in high-income countries, affecting over 1 million children in the UK. ⁶ It still kills people of all ages and the UK has the highest death rate from asthma in children and young people in Europe. ⁷ The National Review of Asthma Deaths highlighted the importance of recognising children and young people at risk and of sharing information. The report recommended that parents and children, as well as those who care for or teach them, should be educated about managing asthma. ⁸ The number of children and young people admitted to hospital and presenting at Accident and Emergency is also rising, with projections of a further 50%–60% increase by 2030 to an estimated 200,000 attendances per year. ⁴ Unnecessary attendances at Accident and Emergency are costly for families and for the State, and many of these cases could be managed outside an acute setting. ⁹

In the UK, most care for children and young people is provided in primary care, while most specialist expertise resides in secondary care. Therefore, pathways of care inevitably traverse organisational boundaries, often multiple times, particularly for children with complex healthcare needs. This can result in plans of care that can be difficult to understand or navigate, contributing to potentially harmful admissions and poor patient experience. ¹⁰ Generally, children have been poorly represented in National Health Service (NHS) surveys and adolescents report the worst experience of NHS care of any age group. ¹¹ This is significant as the attitudes and behaviours that children and young people develop influence their interaction with health services and their decisions about health behaviour throughout their lives. ¹²

There is also a serious short fall in the paediatric workforce, with the number of consultants and trainees entering paediatrics failing to keep pace with patient numbers.^13,14 Similar workforce pressures are present in primary care. ¹⁵ These compounding factors lead to dangerous pressure on already stretched services. Hence, better links need to be made between general practice and specialist children’s health services to reduce the number of children and young people presenting to hospital by enhancing self-care and community management. However, just 7% of general practices report being linked to a consultant paediatrician. ¹⁶ Moreover, access to paediatric expertise in primary care is lacking and the amount of formal paediatric training that general practitioners receive as trainees varies greatly. ¹⁷

Unmet healthcare needs and poorly coordinated care in early life have an impact on mortality, health status and healthcare-seeking behaviour in adult life.^18,19 Better quality healthcare during childhood can also have an economic impact, through improving educational achievement and employment prospects and reducing disability and dependency in later life. As life expectancy increases, this has increasing implications for the future wellbeing and prosperity of the UK. ²⁰ As we acknowledge how poorly their healthcare needs have been met, understanding and evolving how we plan and deliver care that meets the needs of children and young people becomes a key priority.

Progress towards more integrated care

Integrated care aims to improve people's experience of health and care services by reducing fragmentation and improving coordination and continuity of care. One of the strongest drivers towards more integrated and coordinated care provision dates back to the 1970s with the birth of the primary healthcare movement following the World Health Organization’s Alma-Ata Declaration on Primary Health Care. Subsequently, strengthening primary healthcare has been recognised worldwide as the key to achieving strong universal health coverage with good evidence to demonstrate its impact. ²¹ Integrated care is complex, and strategies can take many different forms, targeting different levels of service provision. Vertical integration aims to bring together elements of healthcare such as primary and secondary care services, thereby preventing patients from experiencing discontinuity of care when they are transferred between community and hospital settings. Horizontal integration aims to tackle lack of coordination between health services, social services and other care providers. A further distinction can be made between real integration, in which organisations merge their services, and virtual integration, in which providers work together through networks and alliances. ²²

In the UK, integrated care has been an ongoing commitment for our NHS and successive governments have sought to address this in a variety of ways and with varying success. The NHS Five Year Forward View sets a collective vision for how the NHS needed to change between 2015 and 2021 to address the growing strain on resources and improve outcomes and patient experience. Fifty areas of the country were selected as ‘vanguards’ to lead the development of several new care models, representing a major policy shift towards collaboration and integration. ²³ Most recently, the NHS Long Term Plan set out key ambitions for the service over the next 10 years. ²⁴ It calls for every part of England to be covered by an integrated care system by 2021. Despite years of initiatives, the progress towards achieving integrated services has been slow. ²⁵ The long history of experience and evidence from research has greatly contributed to our understanding of the building blocks for the effective delivery of integrated care. However, despite the recognition that the complexity involved necessitates a pro-active ‘whole systems’ approach, there is no well-defined guidance produced describing the processes needed to support the design and implementation of innovations that support integrated care.

Strategies to support integrated care

There are a number of interventions that can be used to promote shared responsibility between paediatricians and primary care professionals and enable integrated care for children and young people. First, direct telephone and email advice and support lines between general practitioners and paediatricians provide open access to the expertise of secondary care specialists. Over time, this has the effect of upskilling both general practitioners and paediatric colleagues, increasing confidence and competence. It also helps build connections and trust between primary and secondary care and establish strong working relationships between paediatricians and general practitioners. Another model for bridging the gap between specialist secondary care and primary care consists of consultant-run outreach clinics based in a community setting, such as a general practice. This may be combined with multidisciplinary team meetings involving primary healthcare professionals, secondary care specialists and allied health professionals. Patients can be identified based on clinical priority, high utilisation, or vulnerability and unmet need and referred by a consultant or general practitioner to be seen in the clinic or discussed as a clinical case in the multidisciplinary team. Bringing specialist opinion and examination to the patient also improves the experience of healthcare services for children, young people and their families.

A strategic direction outlined in the NHS Long Term Plan is maximising the use of new technologies and effective information technology systems that communicate across organisations. ²⁴ The use of a whole system information system, where general practitioners and specialists can see the same record, helps combat fragmentation of care and foster communication between providers. This type of information system allows patients to receive better care by linking data from a range of providers involved in an individual’s care to create an integrated care record, presenting a more holistic way of viewing a patient’s care history. Data are usually published in graphic form as dashboards. For clinicians, dashboards supplement local and practice knowledge by providing visibility across all care settings and support care professionals to provide quality pro-active care for patients. Dashboards can be used as a care management platform to analyse patient populations, allowing care to be targeted where it is most needed.

Each of the interventions discussed has limited impact when used on its own. In order to break down the structural and perceived barriers between primary and secondary care and see the full benefits of integrated care, a systems approach should be taken that includes versions of all of these tools and techniques. The following section provides an example of an integrated care model, Connecting Care for Children that puts education and building relationships between primary and secondary care at its core to produce a seamless care experience for children and young people.

Connecting Care for Children: an evolving model of integrated care in North West London

Connecting Care for Children was established in 2014 by paediatricians at Imperial College Healthcare NHS Trust and colleagues in local Clinical Commissioning Groups. Working with local general practitioners, Connecting Care for Children has also developed child health general practice hubs, which consist of a primary care network and a paediatric consultant who work together to meet the needs of the local population using one practice as the centre of care. Patients can be identified and referred by a consultant or general practitioner to be seen in the hub clinic or discussed as a clinical case in the multidisciplinary team meeting, where they are joined by a number of professionals, such as health visitors, trainee doctors, mental health workers, school nurses, social workers and other allied health professionals (Figure 1). This provides an opportunity for shared learning between health professionals and promotes networks, collaboration and reciprocity (social capital).

Figure 1.

Connecting Care for Children general practice hub model.

The process of patient selection for Connecting Care for Children hub multidisciplinary teams and clinics has been aided by the development of the Whole Systems Integrated Care Dashboards in North West London. These consist of a suite of tools that link data from a range of providers involved in an individual’s care to create an integrated summary care record which is hosted centrally and can be securely accessed by different NHS systems. The data are stored in a data warehouse and its use is governed by a legal document, the Whole Systems Integrated Care North West London Digital Information Agreement. Case study 1 (Figure 2) demonstrates how the Whole Systems Integrated Care dashboards are transforming the way Connecting Care for Children are working to identify patients with complex health needs. The Whole Systems Integrated Care dashboards can also be used to generate a number of long-term condition-specific ‘watch lists’ or ‘radars’. These allow clinicians to sort patients with long-term conditions by several parameters such as the number of disease-specific care processes, pre-identified risk factors outstanding or by number of attendances at Accident and Emergencyin last year. This in turn helps clinicians to identify patients with multiple risk factors and ensure the patient is reviewed and care is optimised.

Figure 2.

Connecting Care for Children hub clinic case studies (some elements of the cases have been changed in order to preserve anonymity). A&E: Accident and Emergency; GP: general practitioner; MDT, multidisciplinary team; WSIC: Whole Systems Integrated Care.

Using the dashboard radar, hub practices may also run disease-specific hub clinics in collaboration with a paediatric consultant and specialist nurses to review a set of patients on their practice register, such as discussing specific patients with asthma. The Whole Systems Integrated Care asthma patient level radar shows all patients diagnosed with asthma, inhaler prescriptions, number of asthma admissions and date of last asthma review and these details can be used to identify patients who are having frequent exacerbations and require a review of care and prescriptions. A coordinated approach helps to identify risk factors, past exacerbations and poor consultation attendance, particularly where parents fail to collect prescriptions or to bring their children for follow-up after attacks. As with the paediatric hub clinics, general practitioners and other primary care staff may also identify patients that they feel would benefit from specialist clinical management opinion. Case study 2 (Figure 2) illustrates an example case.

Box 1 outlines the findings of a recent evaluation and illustrates the potential impact of the Connecting Care for Children hubs on patient care. ²⁶

Box 1.

Potential impact of the Connecting Care for Children hubs on quality of care.

• 39% reduction in new patient hospital appointments

• A further 42% of appointments were shifted from hospital to general practice

• 19% decrease in sub-specialty new patient appointments

• 17% reduction in paediatric admissions

• 22% decrease in emergency attendances

There has been much interest in the Connecting Care for Children model and how it can be adapted in other locations outside of North West London (Figure 3). International locations include Vejle, Denmark and Melbourne, where the model has been adopted and is the first of its kind in Australia.

Figure 3.

UK and Ireland map of trusts, Clinical Commissioning Groups and other organisations now developing models of care in line with Connecting Care for Children.

Conclusion

Concern about fragmented care commonly focuses on a lack of service coordination for individual patients and particularly the structural and cultural isolation of generalists from specialist services. For care to be truly patient-centred, all professionals treating or caring for an individual need to be able to view information about that individual’s health and social care needs and goals. To meet this challenge, barriers between services and information flows must be broken down by coordinating the work of general practices, community services and hospitals to meet the needs of people requiring care. Good organisation of care across the interface between general practice and secondary care providers is crucial in ensuring that patients receive high-quality care and in making the best use of clinical time and NHS resources in both settings. The Connecting Care for Children case studies in this article demonstrate the strength and richness of the journey towards the development of strong relationships between primary and secondary care, leading to an effective, replicable model of integrated care for children.