Primary care (PC) is a strong determinant of overall health care. Children make up around a fifth of the population of the European Union and European Economic Area and have their own needs and uptake of PC. However, there is little research into how well PC services address their needs. There are large differences in childhood mortality and morbidity patterns in the EU and EEA countries, and there has been a major epidemiological shift in the past half century from predominantly communicable disease, to non-communicable diseases presenting and increasingly managed in PC. This increase in multifactorial morbidities, such as obesity and learning disability, has led to the need for PC systems to adapt to accommodate these changes. Europe presents a challenging picture of unexplained variation in health care delivery and style and of children’s different health experiences and health-related behaviour. The Models of Child Health Appraised (MOCHA) project aimed to describe the PC systems in detail, analyse their components and appraise them from a number of different viewpoints, including professional, public, political and economic lenses. It did this through nine work packages supported by a core management team, and a network of national agents, individuals in each MOCHA country who had the expertise in research and knowledge of their national health care system to answer a wide range of questions posed by the MOCHA scientific teams.
Blair, M., Alexander, D. and Rigby, M. (2019), "The MOCHA Project: Origins, Approach and Methods", Blair, M., Rigby, M. and Alexander, D. (Ed.) Issues and Opportunities in Primary Health Care for Children in Europe, Emerald Publishing Limited, Leeds, pp. 1-12. https://doi.org/10.1108/978-1-78973-351-820191001
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Background and Origins
Primary care (PC) is the first point of contact with the health services for most people. Almost all health care, except for major trauma, starts in PC. 1 PC, therefore, strongly determines the overall pattern of health care, and also to a great extent, it influences the pattern of health of the population. Children are a fifth of the population and have their own needs for and patterns of uptake of PC. Despite this, there is little research into the use of PC by children and young people and into how well PC services address the needs of children and young people.
Children’s health affects the future of Europe. Children are citizens, future workers, future parents and carers and the future elderly population. Ensuring an optimum healthy start to each child’s life is the basis for later active and healthy ageing. Children may only make up to a fifth of the population of each country, but they are 100% of our future.
A child’s health is determined by many factors over the life course, including the influence of the family, peers, culture, beliefs, education, physical environment and of course health services (World Health Organization, 2008). These elements can either protect and promote health, or restrict the family’s choices about health. A child changes considerably at different ages and at developmental stages. At the beginning of life, he or she is entirely dependent on others and highly influenced by the family, social, educational and natural environment. In the teenage years, there is a shift to increasing independence and autonomy, requiring a different health service response.
PC health services are influenced by many determinants, such as the history, culture, politics and economics of a country (see Chapter 17; Blair, Stewart-Brown, Waterson, & Crowther, 2010). The child and family, also, exert a powerful influence in shaping health services through co-creation with health professionals (Ferrer, 2015). It is this dynamic interaction between the developing child and family and the health services that is a core aspect of the Models of Child Health Appraised (MOCHA) project, funded by the European Commission’s Horizon 2020 research programme (European Commission, 2018).
Society has a duty to provide health care. Though much reliance is placed, rightly, on the family, it has to be recognised that for some children, this support is missing or compromised. In addition, a child’s health is strongly affected by the immediate physical, economic and cultural environment; this can take the form of, among other factors, the relationship between pollution and respiratory health; the availability of toys or books in the house and cognitive and language development; or the impact of social media on self-image, peer relationships and well-being. The health services play an important role in safeguarding children from such threats to their health. Essentially, not only is a child’s good health desirable, but it is a fundamental right, as set out by the UN Convention on the Rights of the Child in Article 24 (United Nations, 1989; Chapter 4).
Children’s Health in Europe
The variations in child and adolescent health status in Europe are well described in the latest Report from the World Health Organization (World Health Organization Regional Office for Europe, 2018b). In the past decade there have been considerable improvements in overall childhood mortality with major reductions being seen in all countries over time. Seventeen of the 30 MOCHA countries have adopted the WHO Child and Adolescent Health Regional Strategy 2015–2020 (Regional Committee for Europe, 2015) which was designed to help member states develop:
evidence-based frameworks for review and improvement of child and adolescent health and development policies, programmes and action plans from a life-course perspective; promote multisectoral action; and identify the health sectors role in developing and coordinating policy and delivering services that meet children’s and adolescent’s health needs.
Twelve of the 17 countries adopting the Strategy have reported that they specifically allocated budgets and have monitoring systems in place (World Health Organization Regional Office for Europe, 2018b).
Despite this, there are large differences between Member States in both mortality and morbidity patterns, risk-taking and exploratory behaviours, mental health and well-being, infectious diseases and environmental health, nutrition and physical activity levels and the degree to which rights and participation of children and young people are exercised. For example, the difference in recently reported hospitalisation rates of 0- to 14-year-olds varies fivefold between Spain and Bulgaria (52/1,000 and 256/1,000, respectively). About 90% of Lithuanian 15-year-old boys report “high life satisfaction levels” compared to 84% in the UK. Variations in PC family practitioner service provision indicate that Greece has almost nine times fewer general practitioners (GPs) per 100,000 population than Portugal (World Health Organization Regional Office for Europe, 2018b).
Thus, Europe presents a challenging picture of unexplained variation in health care delivery and style and of children’s different health experiences and health-related behaviour. This also means that Europe provides a unique laboratory to examine different health systems in depth and, in particular, the PC system contribution to health and well-being and its contribution to the health of Europe’s children. There is little knowledge relevant to twenty-first-century Europe of the effects on child health of publically funded health systems versus insurance based, and the relative access and provision of services (especially preventive services) to children within these, together with regulatory and governance issues; the benefits or otherwise of some direct personal service provision (such as immunisation and screening) by dedicated public sector child health services; the role of and provision of different models of school health services; models of the availability and adequacy of direct access for adolescents to mental health and reproductive health services in particular, to avoid unnecessary morbidity and mortality; and models of care for children and their families at the acute–community interface and at health–social care interface for children at risk or in receipt of social care.
The last 50 years has seen a major shift in disease patterns in many countries from a predominance of communicable disease to one of the non-communicable morbidities, such as mental health, long-standing illness and injury (Haggerty, 1995; Wolfe, Thompson, et al., 2013). This epidemiological shift from single agent causes, such as infectious disease, to multifactorial morbidities such as obesity or learning disability requires a change in emphasis in PC practice. Specific professional skills are necessary to tackle these issues, while ensuring that the key attributes of PC – access, coordination, continuity and equitable service provision – are maintained (Starfield, Shi, & Macinko, 2005).
Defining Primary Care and Its Scope
The MOCHA project has worked to certain definitions of functions and features of PC:
Primary health care (PHC) refers to the concept elaborated in the 1978 Declaration of Alma-Ata (World Health Organization, 1978), which is based on the principles of equity, participation, inter-sectoral action, appropriate technology and a central role played by the health system.
PC is first-contact, accessible, continued, comprehensive and coordinated care. Ideally, first-contact care is accessible at the time of need, ongoing care focuses on the long-term health of a person rather than the short duration of a specific disease, comprehensive care is a range of services appropriate to the common problems in the respective members of the population, and coordination is the role by which PC acts to coordinate other specialists that the patient may need (World Health Organization, 2018a).
General practice is a term now often used loosely to cover the general practitioner and other personnel and is therefore synonymous with PC and family medicine (FM). Originally, it was meant to describe the concept and model around the most significant single player in PC: the general practitioner or PC physician, while FM originally encompassed the notion of a team approach as well as recognition of the patient’s family own setting. The general practitioner is the only physician who operates at the nine levels of care: prevention, screening, early diagnosis, diagnosis of established disease, management of disease, management of disease complications, rehabilitation, palliative care and counselling (World Health Organization, 2018a).
FM or PC teams can vary between countries and in size: the core team usually is the general practitioner and a nurse, but can comprise a multidisciplinary team of up to 30 professionals including community nurses, midwives, feldshers, 2 dentists, physiotherapists, social workers, psychiatrists, speech and language therapists, dietitians, pharmacists, administrative staff and managers. PC/FM teams should be patient-centred, so their composition and organisational model can change over time (World Health Organization, 2018a).
PC paediatricians deal comprehensively with the health and well-being of infants, children and adolescents within the context of their families, communities and cultures. PC paediatrics sees infants, children and adolescents as its main subject of care, respecting their autonomy and involving parents, guardians and/or custodians as integral part of the ‘unit of care’. They may or may not work with multidisciplinary teams (ECPCP, 2018).
Nursing encompasses autonomous and collaborative care of individuals of all ages, families, groups and communities, sick or well and in all settings. Nursing includes the promotion of health, prevention of illness and the care of ill, disabled and dying people. Advocacy, promotion of a safe environment, research, participation in shaping health policy and in patient and health systems management, and education are also key nursing roles. Nurses include professional nurses, enrolled nurses, auxiliary nurses and other nurses such as dental or PC nurses (International Council of Nurses, 2015).
Scope of Primary Child Health Care in MOCHA
The principles of PC can be described by their functioning; however, the pattern of provision of each can vary according to regulation and governance, funding mechanism, access rules and distribution within a community. Thus, there are many forms of PC for children across Europe which are taken as being within the scope of the MOCHA project. They are as follows:
physician care for acute (in and out of office hours) and chronic illness;
nursing care including home visiting (especially where the nurse acts autonomously or with only very broad supervision);
school health (school is frequently considered as ‘outside’ the usual model of PC services – but is often the primary access point for health care for this cohort of children)
direct access services, particularly for adolescents (also often considered outside PC, but a vital first contact point);
community dental services;
health promotion services; and
society-facing e-health (telephone hotlines, websites and apps).
Despite PC being an important aspect of health care for children, it is at the same time a relatively under-addressed area of health systems research. This is despite the importance and potential for massive health gains that focusing on the child population of Europe can provide both for children and young people themselves (well-being) and for future adults (well becoming). On this background, a number of publications have described the previous provision of paediatric services in PC in Europe and have demonstrated a pattern of decreasing numbers of PC paediatric providers and an increase in GP led and mixed medical and nursing systems (Ehrich et al., 2015; van Esso et al., 2010; Katz, Rubino, Coller, Rosen, & Ehrich, 2002). However, evidence of differences in outcomes attributable to different systems is somewhat scant (Wolfe, Thompson, et al., 2013) and certainly there has to date been no systematic research of all 30 EU and EEA countries carried out prior to the MOCHA project.
The EC Horizon 2020 call in the area of public health care research in 2014 (H2020-PHC-23-2014, Developing and comparing new models for safe and efficient, prevention oriented health and care systems) gave an opportunity for us to bid successfully for a €6.8m grant to enable the Imperial College-led team to research the primary child health care provision in 28 EU and two EEA countries with the objective of describing and appraising this diversity of health care systems in relation to child health and with the advantage of a number of different and complementary scientific disciplines. We were keen to build on the knowledge and experience gained on previous European projects on which many of the scientists had worked together. These included CHILD (on indicators), PHASE (on public health actions for a safer Europe), EUGLOREH (on state of health), RICHE (on child health research gaps) and TRANSFoRm (on linking health databases), as well as the WHO European Region Child and Adolescent Health and Development Strategy 2005 and its monitoring subproject.
A strong feature of MOCHA, as was also the case in the aforementioned projects, has been the assembly of a very broad multidisciplinary research team of selected scientists from across Europe, together with focussed American and Australian input. The team consisted of 19 institutional partners in 11 countries with expert scientists in the fields of paediatric, adolescent and family practice medicine, child public health, nursing, psychology, policy and health management, political science, sociology, statistics, informatics, epidemiology and health economics. Like a kaleidoscope, we were able to shine many different lights on the issue and look at PC in its many forms. The following sections describe the overall aims and how the project was structured to meet these.
MOCHA Project Aims
A key objective for MOCHA was firstly to describe the PC systems in detail and their components and to appraise them from a number of different viewpoints, professional, public (including parents, children and wider community), political and economic lenses.
More specifically, we wished:
to describe the various models of PC that exist in the 28 EU countries and two EEA countries;
to describe the full scope of PC that exists for young people including school and adolescent health services, helplines, community pharmacy and dental services;
to research existing theoretical appraisal frameworks for PC systems and their use;
to source measures of health systems outcomes and PC quality including national and regional databases;
to describe the workforce structure in each country and economic aspects of health-care funding and spend and their relationship;
to analyse equity of provision of the various models;
to describe the types and use of health records systems as an integral part of a modern effective system;
to explore child centred socio-political and cultural context and obtain patient and stakeholder views of the system;
to identify optimal models of patient-centred, prevention-oriented, efficient, resilient, safe and sustainable child health system provision; and
to raise awareness of the issues and assess transferability between settings.
MOCHA Project Structure and Operation
The project was designed around a number of discrete Scientific Work Packages (WPs) with their own leads and focusing on specific interrelated themes listed below:
WP1: Identification of the various models of children’s PHC;
WP2: Safe and efficient interfaces of models of children’s PHC;
WP3: Effective models of school and adolescent health services;
WP4: Identification and application of innovative measures of quality and outcomes of models;
WP5: Identification and use of derivatives of large data sets and systems to measure quality;
WP6: Economic and skill set evaluation and analysis of models;
WP7: Ensuring equity for all children in all models;
WP8: Use of electronic records to enable safe and efficient models; and
WP9: Validated optimal models of children’s prevention-oriented PHC.
The various scientific WPs were supported by a core project management team also responsible for dissemination strategy for the outputs. An external advisory board (EAB) was assembled to give further scientific and contextual support to the core team and WP leads throughout the project period. This consisted of individuals drawn from international scientists, non-government organisations and European specialist associations, with its own chairperson.
A full list of the scientists in each WP and the leads and EAB members is given in Appendix 1.
Another principle feature has been the extensive use of country agents as informants with local knowledge of the national situation, who have responded to the survey questions set by the scientist teams.
Identifying the Country Agents
Each of the 11 EU/EEA Scientific Partner countries nominated one individual who could act as country agent for their country. In the remaining 19 countries where there was no research partner, the MOCHA country agents were identified through a combination of previous European Union research projects, word of mouth, contacts and requests. This group of individuals were required to undertake specific information gathering tasks to defined instructions and supply academically robust material (see Appendix 2 for a list of Country Agents). The MOCHA project used a mixed-methods approach, reflecting the many influences and components of PC. The agents were expected to have a good knowledge of children’s health issues and the national health system and health determinant issues in their country. In addition, they needed to recognise the importance of complete and accurate data being obtained for research and to work with high integrity and have the ability to deal with vernacular material. High levels of trustworthiness and confidence were necessary prerequisites for the scientific team.
We knew that The MOCHA question topics were likely to be diverse, ranging from the care in the community of children with complex care needs, to national data surveillance of child PC tracer conditions, to qualitative research into cultural influences on child health policy-making. Thus, there was a clear expectation that they were also expected to have access to an adequate network to enable the collection of material on aspects on which they themselves were not necessarily always expert.
Developing the Country Agent Working Process and Project Timetable
The Country Agent process was based on ‘rounds’ of questioning; which began in October 2015 and ended in March 2018. Each round took approximately eight weeks to complete, and each stage within the process was timetabled so that everyone in the project knew when to expect questions and resulting data. In total, 15 rounds of questions were completed during the project.
Broadly, a round consisted of between two and four sets of questions from one or more of the MOCHA WPs. Within the overall scientific plan of the project, each WP team set out its own data requirements strategy, and this was shared at project level to maximise corporate ownership and depth of use. Each WP research team booked a question for a particular round via the project’s Research Coordinator, depending on when the relevant deliverable was due, and the logistics of analysis and reporting.
Each WP devised a question set relevant to their research topic, which was then sent to the research coordinator. The objective, rationale and content of each question set were discussed in depth by the MOCHA management team to ensure scientific validity, linguistic clarity and relevance to the overall aims of the MOCHA project. Once agreement at this stage was reached, the questions were then sent to a technical subgroup of the project’s EAB for further feedback and revision if necessary, in conjunction with the question authors and research coordinator. The technical subgroup comprised four EAB members who expressed an interest in reviewing the country agent questions. They were sent the questions and given approximately two weeks to give feedback via the research coordinator who discussed suggestions with the relevant WP research team.
The questions were then finalised by the research coordinator and then sent to the country agents who were given approximately four weeks to return the data. This was sent to the research coordinator, who then passed the answers to the research teams for analysis. Any late answers were chased up by the research coordinator, who kept constant communication with each country agent throughout the project. The question process methods are summarised in Figure 1.1.
Data Collection by the Country Agents
The country agents had to fulfil a number of tasks in the project: to gather data for each country, identify expert informants, collate and synthesise data, seek clarification of the data and review project reports. Over the course of the project, they had to answer 15 rounds of questions, which totalled over 900 individual questions and, throughout the life of the project, contact over 100 expert informants. Identifying and contacting the relevant experts in each country was a key skill of the country agent, requiring tenacity and perseverance throughout. The country agents were professional and skilled in research, able to assess and collate data, avoiding artificially showing their country in a falsely positive (or negative) light, as well as adhering to the schedule of the rounds of questions as far as possible.
Each WP was responsible for the collation of data passed on by the Research Coordinator, and these first-level analyses were made available to other WP teams via the MOCHA project web portal. A number of different techniques were used by the WP scientists in analysing the data from multiple sources. Some of these are listed below and included the following:
systematic and narrative review and meta-analysis of key functions in relation to life course related tracer conditions;
the use of case studies and clinical scenarios to reveal the underlying structural and process mechanisms in each country;
use of standardised survey tools, for example, Standards for Systems of Care for Children and Youth with Special Health Care Needs (WP2) applied to an EU setting;
structural equation modelling (SEM) and unified business modelling techniques (UML) were applied for a number of tracer conditions or programmes of care; respectively;
public preference studies were used to ascertain multiple stakeholder perspectives on scenarios of optimal care; and
qualitative research using thematic analysis of CA text responses and child and parent interviews.
Coordination and WP Interaction
A key aspect of the project management has been the cross fertilisation of individual WPs by regular half-yearly face-to-face meetings and monthly Skype conferencing which facilitated joint learning, supplemented on occasions by specific topic-based workshops. This was a very formative process over the duration of the project, allowing the development of a number of core themes to emerge. Figure 1.2 indicates how this was facilitated.
Throughout the project period, dissemination at a variety of different discipline national and international conferences has allowed us to test some of our emerging ideas with wider scientific and policy audiences. The MOCHA website www.childhealthservicemodels.eu contains a full list of dissemination activities.
There is no doubt that we set itself a challenging remit with a responsibility to the 100 million children living in Europe today. The remainder of this publication details the journey we have taken over the last 42 months and the key items of what our extended team has discovered.
According to the UK Royal College of General Practitioners in evidence to the UK Parliamentary Select Committee on Health, primary care accounts for 90% of patient contacts with the English NHS, but the source is not cited, and no equivalent figure is available from WHO, OECD or Eurostat.
A health care professional who provides various medical services limited to emergency treatment and ambulance practice.
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- Chapter 1 The MOCHA Project: Origins, Approach and Methods
- Chapter 2 Models of Primary Care and Appraisal Frameworks
- Chapter 3 Listening to Young People
- Chapter 4 Child Centricity and Children’s Rights
- Chapter 5 Equity
- Chapter 6 The Limited Inclusion of Children in Health and Health-related Policy
- Chapter 7 The Invisibility of Children in Data Systems
- Chapter 8 The Conundrum of Measuring Children’s Primary Health Care
- Chapter 9 Measurement Conundrums: Explaining Child Health Population Outcomes in MOCHA Countries
- Chapter 10 Services and Boundary Negotiations for Children with Complex Care Needs in Europe
- Chapter 11 School Health Services
- Chapter 12 Primary Care for Adolescents
- Chapter 13 Workforce and Professional Education
- Chapter 14 e-Health as the Enabler of Primary Care for Children
- Chapter 15 Affiliate Contributors to Primary Care for Children
- Chapter 16 The Transferability of Primary Child Healthcare Systems
- Chapter 17 National and Public Cultures as Determinants of Health Policy and Production
- Chapter 18 Bringing MOCHA Lessons to Your Service
- Chapter 19 Evidence to Achieve an Optimal Model for Children’s Health in Europe
- Appendix 1: List of MOCHA Scientists
- Appendix 2: List of MOCHA Country Agents