Elsevier

The Lancet

Volume 381, Issue 9860, 5–11 January 2013, Pages 73-87
The Lancet

Review
A healthy nation: strengthening child health research in the UK

https://doi.org/10.1016/S0140-6736(12)61818-2Get rights and content

Summary

Despite a general acknowledgment that research in children is necessary and ethical, the evidence base for child-specific treatments is still sparse. We investigated children's biomedical and health services research in the UK in relation to training, infrastructure and activity, research evidence, and visibility. We show that excellent opportunities for career researchers exist through a competitive, national integrated academic training programme, but that the number of academic paediatricians has decreased by 18% between 2000 and 2011, falling from 11·3% to 5·9% of the consultant workforce. The potential for rapid delivery of studies in children through the National Health Service (NHS) is not being realised: clinical trainees are poorly equipped with core research skills; most newly appointed consultant paediatricians have little or no research experience; less than 5% of contracted consultant time supports research; less than 2·5% of the 2 million children seen in the NHS every year are recruited to studies; and ten of the 20 UK children's hospitals do not have a clinical research facility. Support through National Institute for Health Research networks is good for studies into drugs, but inconsistent for non-drug research; less than 5% of registered studies involve children and only one children's biomedical research centre has been allocated funding from 2012. Of the UK annual public and charitable biomedical research expenditure of roughly £2·2 billion, about 5% is directed at child health research. The scant evidence base is impeding the development of clinical guidance and policy—less than 20% of the outputs of the National Institute for Health and Clinical Excellence are applicable to children. Paediatric representation on major research boards is weak. Parent and young people's advocacy is fragmented, and their views are insufficiently heeded by regulatory bodies. The strong UK Government commitment to biomedical research has not been translated fully to research for children. The power of research in children to turn the tide of the growing burden of non-communicable, chronic, adult diseases that have their origins in early life, to benefit the health of an ageing population and future generations, and to reduce health-care costs is inadequately recognised. On the basis of our findings, we make several recommendations to improve early-years research, including the formation of multidisciplinary, cross-institutional groups of clinical and non-clinical child health researchers and their access to diagnostic and laboratory facilities suitable for children; a unified Children's Research Network for drug studies and non-drug studies; regulatory assessment of research that is proportionate and based on consistent national criteria; an expansion of research posts; support for parents' and young people's advocacy; collaboration between children's research charities; improved research training for paediatric trainees; and closer integration of child health research with core NHS activities.

Introduction

There has traditionally been a reluctance to include children in clinical studies, and therefore many therapies that were developed for adults have been subsequently adopted for use in children, rather than investigated specifically for paediatric use. In large part, this situation arose from a desire to protect children from unethical research, the potential dangers of experimental drugs, and invasive investigative techniques. These historical constraints no longer serve children well. Research in children is necessary, since the biology of any given disease is not necessarily the same in children as in adults; for example, adolescents with leukaemia have significantly better survival when treated with regimens developed for children rather than with those developed for adults.1 Children's physiology changes with age and the actions of drugs in children can be different from in adults. Such differences can have tragic consequences when treatments are given to children without having been adequately tested in them. One of the earliest antibiotics developed, chloramphenicol, although very effective for treatment of infections in all age groups, is poorly metabolised in babies, in whom its use can result in serious illness and even death. Aspirin, which is widely used for pain relief and to reduce fever in adults, is not recommended for use in children because of its association with a serious disorder, Reye's syndrome.

In the past two decades, a proliferation of advances, including powerful post-genomic technologies, in-vivo imaging, non-invasive monitoring, high-throughput analytical techniques that use tiny sample volumes, bioinformatics, and epigenetics, have occurred, which provide opportunities to involve children in research as never before and unravel the molecular bases of links between early life exposures, development, deprivation, and disease. In parallel, the organisational structures of the UK National Health Service (NHS), the largest universal health-care system in the world, provide a unique platform to integrate clinical research and patients' care, accelerate the translation of new treatments into practice, and rigorously test preventive interventions. In response to concern that these unprecedented opportunities are not being seized on to harness the potential of research in children to improve their wellbeing and reduce the growing burden of non-communicable, chronic diseases that have their origins in early development and lead to premature adult death, the UK Royal College of Paediatrics and Child Health (RCPCH) established a commission to review medical research in infants, children, and young people. In this Review, we present a summary of the commission's report, Turning the tide: harnessing the power of child health research.

We use the phrase child health research to include primary research that addresses disease prevention and treatment, health services research that addresses the organisation and delivery of health care, and health policy research, which usually involves the synthesis of evidence from primary research. We assessed four dimensions of UK child health research and investigated how the UK compares with other countries. The four dimensions assessed were training and skills; infrastructure, support, and activity; the need for research and the extent to which national clinical guidelines and policies that affect child health are informed by evidence; and visibility, awareness, and influence. Details of the methods used are provided in the full report. Unless otherwise stated, all websites were accessed in August, 2012.

Section snippets

Paediatric training and research

The UK General Medical Council and specialty curricula require that trainee doctors develop an understanding of medical research and are competent in critical appraisal and formulation of research questions.2 Exposure to paediatrics in UK medical schools has been progressively reduced to the present average of 6·6 weeks, and little opportunity exists for research experience. After graduation, UK medical trainees enter a 2-year Foundation Programme, a few of which include the opportunity for 4

Research infrastructure in the UK

The UK has a long and successful history of clinical research, but it has not been without times of difficulty. In 2001, the Academy of Medical Sciences brought concerns to the attention of the House of Lords Science and Technology Committee that clinical research in the UK had become difficult to undertake, and that the regulatory environment was a deterrent. The Academy's 2003 report, Strengthening clinical research,10 was instrumental in the establishment of the UK Clinical Research

Child health and evidence-based health care

The translation of research evidence into practice and national policy is integral to the improvement of children's health and wellbeing. The UK does not fare well in assessments of child wellbeing. In a comprehensive assessment of children and young people in 21 developed countries by UNICEF,39 the Netherlands heads the table for overall child wellbeing; the UK and the USA are in the bottom third of the rankings for five of the six dimensions assessed. No relation was identified between child

Visibility and influence

A striking dissociation exists between high-level national policy statements that acknowledge the importance of children's health and wellbeing, such as the UK Department of Health's national service framework for children, young people, and maternity services,52 and the poor recognition of the need for research in children to generate the evidence base needed to improve medical treatments and health care. Successive UK Governments have articulated strong commitment to biomedical research, and

Representation

Infants, children, and young people are poorly represented in UK health research—a situation that is mirrored around the world. Improvements in child health lead to accumulation of advantages throughout life and, arguably, investment in the earliest years will reap the biggest rewards. However, the reverse situation is currently true, with the major proportion of health research activity and expenditure targeted at later life. The UK is not a healthy country, ranked 21st, below many other

Conclusions

The potential of research in children has been neglected for too long. Children, and the adults they will become, deserve a UK-wide culture that fosters scientific enquiry, scholarship, and innovation, and that recognises the possibilities for improvement of population health through early-years research that extends from basic science and clinical studies, through to improved delivery of health care and translation of research evidence into clinical guidance and policies to preserve health and

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