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      Five models for child and adolescent data linkage in the UK: a review of existing and proposed methods

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          Abstract

          Over the last decade dramatic advances have been made in both the technology and data available to better understand the multifactorial influences on child and adolescent health and development. This paper seeks to clarify methods that can be used to link information from health, education, social care and research datasets. Linking these different types of data can facilitate epidemiological research that investigates mental health from the population to the patient; enabling advanced analytics to better identify, conceptualise and address child and adolescent needs. The majority of adolescent mental health research is not able to maximise the full potential of data linkage, primarily due to four key challenges: confidentiality, sampling, matching and scalability. By presenting five existing and proposed models for linking adolescent data in relation to these challenges, this paper aims to facilitate the clinical benefits that will be derived from effective integration of available data in understanding, preventing and treating mental disorders.

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          Global burden of disease in young people aged 10-24 years: a systematic analysis.

          Fiona M Gore, Paul J N Bloem, George C Patton … (2011)
          Young people aged 10-24 years represent 27% of the world's population. Although important health problems and risk factors for disease in later life emerge in these years, the contribution to the global burden of disease is unknown. We describe the global burden of disease arising in young people and the contribution of risk factors to that burden. We used data from WHO's 2004 Global Burden of Disease study. Cause-specific disability-adjusted life-years (DALYs) for young people aged 10-24 years were estimated by WHO region on the basis of available data for incidence, prevalence, severity, and mortality. WHO member states were classified into low-income, middle-income, and high-income countries, and into WHO regions. We estimated DALYs attributable to specific global health risk factors using the comparative risk assessment method. DALYs were divided into years of life lost because of premature mortality (YLLs) and years lost because of disability (YLDs), and are presented for regions by sex and by 5-year age groups. The total number of incident DALYs in those aged 10-24 years was about 236 million, representing 15·5% of total DALYs for all age groups. Africa had the highest rate of DALYs for this age group, which was 2·5 times greater than in high-income countries (208 vs 82 DALYs per 1000 population). Across regions, DALY rates were 12% higher in girls than in boys between 15 and 19 years (137 vs 153). Worldwide, the three main causes of YLDs for 10-24-year-olds were neuropsychiatric disorders (45%), unintentional injuries (12%), and infectious and parasitic diseases (10%). The main risk factors for incident DALYs in 10-24-year-olds were alcohol (7% of DALYs), unsafe sex (4%), iron deficiency (3%), lack of contraception (2%), and illicit drug use (2%). The health of young people has been largely neglected in global public health because this age group is perceived as healthy. However, opportunities for prevention of disease and injury in this age group are not fully exploited. The findings from this study suggest that adolescent health would benefit from increased public health attention. None. Copyright © 2011 Elsevier Ltd. All rights reserved.
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            ALSPAC--the Avon Longitudinal Study of Parents and Children. I. Study methodology.

            J. Golding, M. Pembrey, R. Jones (2001)
            ALSPAC (The Avon Longitudinal Study of Parents and Children, formerly the Avon Longitudinal Study of Pregnancy and Childhood) was specifically designed to determine ways in which the individual's genotype combines with environmental pressures to influence health and development. To date, there are comprehensive data on approximately 10,000 children and their parents, from early pregnancy until the children are aged between 8 and 9. The study aims to continue to collect detailed data on the children as they go through puberty noting, in particular, changes in anthropometry, attitudes and behaviour, fitness and other cardiovascular risk factors, bone mineralisation, allergic symptoms and mental health. The study started early during pregnancy and collected very detailed data from the mother and her partner before the child was born. This not only provided accurate data on concurrent features, especially medication, symptoms, diet and lifestyle, attitudes and behaviour, social and environmental features, but was unbiased by parental knowledge of any problems that the child might develop. From the time of the child's birth many different aspects of the child's environment have been monitored and a wide range of phenotypic data collected. By virtue of being based in one geographic area, linkage to medical and educational records is relatively simple, and hands-on assessments of children and parents using local facilities has the advantage of high quality control. The comprehensiveness of the ALSPAC approach with a total population sample unselected by disease status, and the availability of parental genotypes, provides an adequate sample for statistical analysis and for avoiding spurious results. The study has an open policy in regard to collaboration within strict confidentiality rules.
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              A decade of data linkage in Western Australia: strategic design, applications and benefits of the WA data linkage system.

              C Holman, A. Bass, Diana Rosman … (2008)
              The report describes the strategic design, steps to full implementation and outcomes achieved by the Western Australian Data Linkage System (WADLS), instigated in 1995 to link up to 40 years of data from over 30 collections for an historical population of 3.7 million. Staged development has seen its expansion, initially from a linkage key to local health data sets, to encompass links to national and local health and welfare data sets, genealogical links and spatial references for mapping applications. The WADLS has supported over 400 studies with over 250 journal publications and 35 graduate research degrees. Applications have occurred in health services utilisation and outcomes, aetiologic research, disease surveillance and needs analysis, and in methodologic research. Longitudinal studies have become cheaper and more complete; deletion of duplicate records and correction of data artifacts have enhanced the quality of information assets; data linkage has conserved patient privacy; community machinery necessary for organised responses to health and social problems has been exercised; and the commercial return on research infrastructure investment has exceeded 1000%. Most importantly, there have been unbiased contributions to medical knowledge and identifiable advances in population health arising from the research.
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                Author and article information

                Journal
                Journal ID (nlm-ta): Evid Based Ment Health
                Journal ID (iso-abbrev): Evid Based Ment Health
                Journal ID (hwp): ebmental
                Journal ID (publisher-id): ebmh
                Title: Evidence-Based Mental Health
                Publisher: BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                ISSN (Print): 1362-0347
                ISSN (Electronic): 1468-960X
                Publication date (Print): February 2020
                Publication date (Electronic): 11 February 2020
                Volume: 23
                Issue: 1
                Pages: 39-44
                Affiliations
                [1 ] departmentDepartment of Psychiatry , University of Oxford , Oxford, UK
                [2 ] Oxford Health NHS Foundation Trust , Oxford, UK
                [3 ] departmentCentre for Health, Law and Emerging Technologies (HeLEX), Faculty of Law , University of Oxford , Oxford, UK
                [4 ] departmentChildren's Psychological Medicine , Oxford University Hospitals NHS Foundation Trust , Oxford, UK
                Author notes
                [Correspondence to ] Dr Karen Laura Mansfield, Department of Psychiatry, University of Oxford, Oxford OX3 7JX, UK; karen.mansfield@ 123456psych.ox.ac.uk
                Author information
                http://orcid.org/0000-0003-0342-7926
                http://orcid.org/0000-0002-2394-5299
                http://orcid.org/0000-0001-9323-9413
                http://orcid.org/0000-0001-9342-2365
                Article
                Publisher ID: ebmental-2019-300140
                DOI: 10.1136/ebmental-2019-300140
                PMC ID: 7034351
                PubMed ID: 32046992
                SO-VID: 9b1ef1c2-f497-4574-ad83-08012201583d
                Copyright © © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
                License:

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

                History
                Date received : 23 December 2019
                Date revision received : 08 January 2020
                Date accepted : 09 January 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000265, Medical Research Council;
                Award ID: MC_PC_17215
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health Research;
                Award ID: BRC-1215-20005
                Categories
                Subject: Clinical Review
                Subject: 1506
                Subject: 1507
                Series title: Child and adolescent mental health
                Custom metadata
                special-feature unlocked
                special-feature editors-choice
                access-type free

                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: child & adolescent psychiatry,depression & mood disorders
                Data availability:
                ScienceOpen disciplines: Clinical Psychology & Psychiatry
                Keywords: child & adolescent psychiatry, depression & mood disorders

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