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Information and communication technologies can transform how services can be and are delivered as has already happened in other arenas, such as civil aviation, financial services and retailing. Most modern health care is heavily dependent on e-health, including record keeping, targeted information sharing and digital diagnostic and imaging techniques. However, there remains little scientific knowledge base for optimal system content and function in primary health care, particularly for children. Models of Child Health Appraised (MOCHA) aimed to establish the current e-health situation in children’s primary care services. Electronic health records (EHRs) are in regular use in much of northern and western Europe and in some newer European Union Member States, but other countries lag behind. MOCHA investigated the use of unique identifiers, the use of case-based public health EHRs and the capability of record linkage, linkage of information with school health data and monitoring of social media influences, such as health websites and health apps. A widespread lack of standards underlined a lack of research enquiry into this issue in terms of children’s health data and health knowledge. Health websites and apps are a growing area of healthcare delivery, but there is a worrying lack of safeguards in place. The challenge for policy-makers and practitioners is to be aware and to lead on the innovative harnessing of new technologies, while protecting child users against new harms.

This study aims to evaluate the quality of transition from child and adolescent services to adult intellectual disability services, using the relevant National Institute for Health and Care Excellence (NICE) standard (QS140). In addition, this study also identifies any differences in transition quality between those young people with intellectual disability with and without autism.

Using routinely collected clinical data, this study identifies demographic and clinical characteristics of, and contextual complexities experienced by, young people in transition between 2017 and 2020. Compliance with the quality standard was assessed by applying dedicated search terms to the records.

The study highlighted poor recording of data with only 22% of 306 eligible cases having sufficient data recorded to determine compliance with the NICE quality standard. Available data indicated poor compliance with the standard. Child and adolescent mental health services, generally, did not record mental health co-morbidities. Compliance with three out of the five quality statements was higher for autistic young people, but this only reached statistical significance for one of those statements (i.e. having a named worker, p = 0.02).

Missing data included basic clinical characteristics such as the level of intellectual disability and the presence of autism. This required adult services to duplicate assessment procedures that potentially delayed clinical outcomes. This study highlights that poor compliance may reflect inaccurate recording that needs addressing through training and introduction of shared protocols.

To the best of the authors’ knowledge, this is the first study to examine the transition process between children’s and adults’ intellectual disability health services using NICE quality standard 140.

The aim of this paper is to identify some of the challenges that need to be addressed to accelerate the deployment and adoption of smart health technologies for ubiquitous healthcare access. The paper also explores how internet of things (IoT) and big data technologies can be combined with smart health to provide better healthcare solutions.

The authors reviewed the literature to identify the challenges which have slowed down the deployment and adoption of smart health.

The authors discussed how IoT and big data technologies can be integrated with smart health to address some of the challenges to improve health-care availability, access and costs.

The results of this paper will help health-care designers, professionals and researchers design better health-care information systems.

A policy of surveillance which interferes with the fundamental right to a private life requires credible justification and a supportive evidence base. The authority for such interference should be clearly detailed in law, overseen by a transparent process and not left to the vagaries of administrative discretion. If a state surveils those it governs and claims the interference to be in the public interest, then the evidence base on which that claim stands and the operative conception of public interest should be subject to critical examination. Unfortunately, there is an inconsistency in the regulatory burden associated with access to confidential patient information for non-health-related surveillance purposes and access for health-related surveillance or research purposes. This inconsistency represents a systemic weakness to inform or challenge an evidence-based policy of non-health-related surveillance. This inconsistency is unjustified and undermines the qualities recognised to be necessary to maintain a trustworthy confidential public health service. Taking the withdrawn Memorandum of Understanding (MoU) between NHS Digital and the Home Office as a worked example, this chapter demonstrates how the capacity of the law to constrain the arbitrary or unwarranted exercise of power through judicial review is not sufficient to level the playing field. The authors recommend ‘levelling up’ in procedural oversight, and adopting independent mechanisms equivalent to those adopted for establishing the operative conceptions of public interest in the context of health research to non-health-related surveillance purposes.

The authors developed and validated an algorithm using health administrative data to identify patients who are attached or uncertainly attached to a primary care provider (PCP) using patient responses to a survey conducted in Ontario, Canada.

The authors conducted a validation study using as a reference standard respondents to a community-based survey who indicated they did or did not have a PCP. The authors developed and tested health administrative algorithms against this reference standard. The authors calculated the sensitivity, specificity positive predictive value (PPV) and negative predictive value (NPV) on the final patient attachment algorithm. The authors then applied the attachment algorithm to the 2017 Ontario population.

The patient attachment algorithm had an excellent sensitivity (90.5%) and PPV (96.8%), though modest specificity (46.1%) and a low NPV (21.3%). This means that the algorithm assigned survey respondents as being attached to a PCP and when in fact they said they had a PCP, yet a significant proportion of those found to be uncertainly attached had indicated they did have a PCP. In 2017, most people in Ontario, Canada (85.4%) were attached to a PCP but 14.6% were uncertainly attached.

Administrative data for nurse practitioner's encounters and other interprofessional care providers are not currently available. The authors also cannot separately identify primary care visits conducted in walk in clinics using our health administrative data. Finally, the definition of hospital-based healthcare use did not include outpatient specialty care.

Uncertain attachment to a primary health care provider is a recurrent problem that results in inequitable access in health services delivery. Providing annual reports on uncertainly attached patients can help evaluate primary care system changes developed to improve access. This algorithm can be used by health care planners and policy makers to examine the geographic variability and time trends of the uncertainly attached population to inform the development of programs to improve primary care access.

As primary care is an essential component of a person's medical home, identifying regions or high need populations that have higher levels of uncertainly attached patients will help target programs to support their primary care access and needs. Furthermore, this approach will be useful in future research to determine the health impacts of uncertain attachment to primary care, especially in view of a growing body of the literature highlighting the importance of primary care continuity.

This patient attachment algorithm is the first to use existing health administrative data validated with responses from a patient survey. Using patient surveys alone to assess attachment levels is expensive and time consuming to complete. They can also be subject to poor response rates and recall bias. Utilizing existing health administrative data provides more accurate, timely estimates of patient attachment for everyone in the population.

This paper introduces a new set of equity and rights-based principles for health data governance (HDG) and makes the case for their adoption into global, regional and national policy and practice.

This paper discusses the need for a unified approach to HDG that maximises the value of data for whole populations. It describes the unique process employed to develop a set of HDG principles. The paper highlights lessons learned from the principle development process and proposes steps to incorporate them into data governance policies and practice.

More than 200 individuals from 130 organisations contributed to the development of the HDG principles, which are clustered around three interconnected objectives of protecting people, promoting health value and prioritising equity. The principles build on existing norms and guidelines by bringing a human rights and equity lens to HDG.

The principles offer a strong vision for HDG that reaps the public good benefits of health data whilst safeguarding individual rights. They can be used by governments and other actors as a guide for the equitable collection and use of health data. The inclusive model used to develop the principles can be replicated to strengthen future data governance approaches.

The article describes the first bottom-up effort to develop a set of principles for HDG.

The 30 MOCHA (Models of Child Health Appraised) countries are diverse socially, culturally and economically, and differences exist in their healthcare systems and in the scope and role of primary care. An economic analysis was undertaken that sought to explain differences in child health outcomes between countries. The conceptual framework was that of a production function for health, whereby health outputs (or outcomes) are assumed affected by several ‘inputs’. In the case of health, inputs include personal (genes, health behaviours) and socio-economic (income, living standards) factors and the structure, organisation and workforce of the healthcare system. Random effects regression modelling was used, based on countries as the unit of analysis, with data from 2004 to 2016 from international sources and published categorisations of healthcare system. The chapter describes the data deficiencies and measurement conundrums faced, and how these were addressed. In the absence of consistent indicators of child health outcomes across countries, five mortality measures were used: neonatal, infant, under five years, diabetes (0–19 years) and epilepsy (0–19 years). Factors found associated with reductions in mortality were as follows: gross domestic product per capita growth (neonatal, infant, under five years), higher density of paediatricians (neonatal, infant, under five years), less out-of-pocket expenditure (neonatal, diabetes 0–19), state-based service provision (epilepsy 0–19) and lower proportions of children in the population, a proxy for family size (all outcomes). Findings should be interpreted with caution due to the ecological nature of the analysis and the limitations presented by the data and measures employed.

Given that the workforce constitutes a principal resource of primary care, appraisal of models of care requires thorough investigation of the health workforce in all Models of Child Health Appraised (MOCHA) countries. This chapter explores this in terms of workforce composition, remuneration, qualifications and training in relation to the needs of children and young people. We have focused on two principal disciplines of primary care; medicine and nursing, with a specific focus on training and skills to care for children in primary care, particularly those with complex care needs, adolescents and vulnerable groups. We found significant disparities in workforce provision and remuneration, in training curricula and in resultant skills of physicians and nurses in European Union and European Economic Area Countries. A lack of overarching standards and recognition of some of the specific needs of children reflected in training of physicians and nurses may lead to suboptimal care for children. There are, of course, many other professions that also contribute to primary care services for children, some of which are discussed in Chapter 15, but we have not had resources to study these to the same detail.

Background: Rising food bank usage in the UK suggests a growing prevalence of food insecurity. However, a formalised, representative measure of food insecurity was not collected in the UK until 2019, over a decade after the initial proliferation of food bank demand. In the absence of a direct measure of food insecurity, this article identifies and summarises longitudinal proxy indicators of UK food insecurity to gain insight into the growth of insecure access to food in the 21st century.

Methods: A rapid evidence synthesis of academic and grey literature (2005–present) identified candidate proxy longitudinal markers of food insecurity. These were assessed to gain insight into the prevalence of, or conditions associated with, food insecurity.

Results: Food bank data clearly demonstrates increased food insecurity. However, this data reflects an unrepresentative, fractional proportion of the food insecure population without accounting for mild/moderate insecurity, or those in need not accessing provision. Economic indicators demonstrate that a period of poor overall UK growth since 2005 has disproportionately impacted the poorest households, likely increasing vulnerability and incidence of food insecurity. This vulnerability has been exacerbated by welfare reform for some households. The COVID-19 pandemic has dramatically intensified vulnerabilities and food insecurity. Diet-related health outcomes suggest a reduction in diet quantity/quality. The causes of diet-related disease are complex and diverse; however, evidence of socio-economic inequalities in their incidence suggests poverty, and by extension, food insecurity, as key determinants.

Conclusion: Proxy measures of food insecurity suggest a significant increase since 2005, particularly for severe food insecurity. Proxy measures are inadequate to robustly assess the prevalence of food insecurity in the UK. Failure to collect standardised, representative data at the point at which food bank usage increased significantly impairs attempts to determine the full prevalence of food insecurity, understand the causes, and identify those most at risk.

Models of Child Health Appraised (MOCHA) defines school health services (SHSs) as those that exist due to a formal arrangement between educational institutions and primary health care. SHSs are unique in that they are designed exclusively to address the needs of children and adolescents in this age group and setting.

We investigated SHSs have been provided to schools and how they contribute to primary healthcare services for school children. We did this by mapping the national school health systems against the standards of the World Health Organization, and against a framework measuring the strength of primary care, adapting this from an existing, adult-focused framework.

We found that all but two countries in the European Union and European Economic Area have SHSs. There, however, remains a need for much greater investment in the professional workforce to run the services, including training to ensure appropriateness and acceptability to young people. Greater collaboration between SHSs and primary care services would lead to better coordination and the potential for better health (and educational) outcomes. Involving young people and families in the design of SHSs and as participants in its outputs would also improve school health.