Background
Methods
Search strategy
Domain | Terms |
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Data | Social Care” OR “Local Authorit*” OR “Local Government” OR “Public Health” OR “Population Health”).ti,ab,kw. or public health/ or local government/ or population health/ |
Linkage | “Data linkage” OR “Data sharing” OR “health data” OR “data access” OR “data integration” OR “social care data” OR “medical record linkage” or “integrated care record” or “administrative data”).ti,ab,kw. or medical record linkage/ |
Barriers and challenges | “Barriers” OR “Challenges” OR “Solutions” OR “Opportunities” OR “Health Inequalities” OR “Problems” OR “Facilitators” or “healthcare disparities” or “health status disparities”).ti,ab,kw. OR healthcare disparities/ or health status disparities/ |
United Kingdom focus | England” OR “Scotland” OR “Northern Ireland” OR “Wales” OR “Welsh” OR “Scottish” OR “United Kingdom” OR “English” OR “Britain” OR “British” OR “UK”).ti,ab,kw. or exp. United Kingdom/
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Inclusion and data extraction
Synthesis
Results
Number | Author, year | Title | Type | Details | Geography |
---|---|---|---|---|---|
1 | Administrative Data Taskforce (2012) [3] | The UK Administrative Data Research Network: Improving Access for Research and Policy | Grey literature | Independent report offering recommendations to the government following examination of best procedures and mechanisms to make administrative data available for research. | England, Wales, Scotland & Northern Ireland |
2 | Aitken, M et al. (2016) [19] | Public responses to the sharing and linkage of health data for research purposes: A systematic review and thematic synthesis of qualitative studies | Peer-reviewed | Systematic review of qualitative studies examining public attitudes towards linking and sharing data for research. | Included studies primarily from the UK and North America |
3 | Atherton, IM et al. (2015) [20] | Barriers and Solutions to Linking and Using Health and Social Care Data in Scotland | Peer-reviewed | Reports the outcome of a meeting of Scottish stakeholders. Covers Scottish experience in linking health and social care data. | Scotland |
4 | Auditor General for Wales (2018) [21] | The maturity of local government in use of data Archwilydd Cyffredinol Cymru | Grey literature | Report presented to the National Assembly. It assesses whether the local government can capitalise on data that it holds. | Wales |
5 | Centre for Data Ethics and Innovation (2020) [22] | Addressing trust in public sector data use | Grey literature | Report exploring barriers to data sharing, focusing mainly on citizen trust. | UK |
6 | Copeland, E (2015) [23] | Small Pieces Loosely Joined: How smarter use of technology and data can deliver real reform of local government | Grey literature | Report describes how local authorities can achieve more by harnessing the principles of digital government and smarter use of technology and data. | UK |
7 | Davies, JM et al. (2016) [24] | Using routine data to improve palliative and end of life care | Peer-reviewed | Disseminates findings of four workshops on using routinely collected health and social care data in palliative and end of life care. | Covers USA, UK and Europe |
8 | Downs, JM et al. (2019) [25] | An approach to linking education, social care and electronic health records for children and young people in South London: A linkage study of child and adolescent mental health service data | Peer-reviewed | Describes a study creating a linked dataset of mental health, social and educational records for research in London. | UK, 4 boroughs in South London |
9 | Comptroller and Auditor General (2019) [26] | Challenges in using data across government | Grey literature | Report by the National Audit Office setting out what the government needs to do with its data to improve services. Reports on challenges and barriers in using data. | UK |
10 | Office for National Statistics & Government Analysis Function (2020) [5] | Joined up data in government - the future of data linking methods | Grey literature | Cross-government review on data linking methods and making recommendations for government data linkage. | UK |
11 | Heitmueller, A. et al. (2014) [27] | Developing public policy to advance the use of big data in health care | Peer-reviewed | Article exploring central questions that policy makers should consider when using ‘big data’ in healthcare. | UK |
12 | Higgins, C & Matthews, K (2020) [28] | Electronic linkage and interrogation of administrative health, social care, and criminal justice datasets: feasibility concerning process and content | Peer-reviewed | Describes a study testing the feasibility of a novel model of electronic linkage and interrogation of large, sensitive, administrative datasets derived from health, social care and criminal justice. | Scotland |
13 | Office for Statistics Regulation (2018) [29] | Joining Up Data for Better Statistics | Grey literature | Report providing insight into current data linkage activity across government and future opportunities. | UK |
14 | Iveson, MH & Deary, IJ (2019) [30] | Navigating the landscape of non-health administrative data in Scotland: A researcher’s narrative | Peer-reviewed | Provides a researcher’s narrative of the steps required to gain the various approvals necessary to access and link non-health administrative data for research in social and cognitive epidemiology. | Scotland |
15 | Kemm, JR et al. (2010) [31] | Social care data in England: What they tell us and what they do not tell us | Peer-reviewed | Reviews the nationally published statistics on adult social services in England, considering their strengths and weaknesses, and how they are produced. | England |
16 | King, G. et al. (2012) [32] | Boundaries and e-health implementation in health and social care | Peer-reviewed | Describes a study exploring the ways in which structural, professional and geographical boundaries have affected e-health implementation in health and social care. | Scotland |
17 | Kneale, D. et al. (2016) [33] | Identifying and appraising promising sources of UK clinical, health and social care data for use by NICE | Grey literature | Report prepared by the EPPI-Centre for NICE. Aimed to aid NICE in identifying opportunities for greater use of real-world data within its work. | UK |
18 | Malomo, F. & Sena, V (2017) [34] | Data Intelligence for Local Government? Assessing the Benefits and Barriers to Use of Big Data in the Public Sector | Peer-reviewed | Article aimed at identifying the main barriers that stop UK local governments from fully benefiting from Big Data. | UK |
19 | Mansfield, KL. et al. (2020) [17] | Five models for child and adolescent data linkage in the UK: a review of existing and proposed methods | Peer-reviewed | Describes current and hypothesised models for data linkage in relation to key challenges that such work presents. | UK |
20 | Mourby, MJ. et al. (2019) [35] | Health Data Linkage for UK Public Interest Research: Key Obstacles and Solutions | Peer-reviewed | Outlines key issues which can prevent access to health data for public interest research using three case studies. Also present recommendations. | UK |
21 | Oyeyemi, A. & Scott, P. (2018) [36] | Interoperability in health and social care: Organisational issues are the biggest challenge | Peer-reviewed | Reports on an investigation of stakeholder views about the major interoperability challenges in health and social care data in England. | England |
22 | Sexton, A. et al. (2017) [37] | A balance of trust in the use of government administrative data | Peer-reviewed | Describes research examining stakeholder perspectives in relation to administrative data sharing and reuse. Specifically explores the issue of trust in collection, analysis and linkage of data. | UK |
23 | Local government association (2019) [38] | Local government social care data and interoperability standards: executive summary for social care professionals | Grey literature | Describes findings of a discovery project which aimed to work with councils, the social care system and interoperability suppliers to understand barriers and solutions to support information sharing across social care. | UK |
24 | Stewart, CH. et al. (2017) [39] | The Scottish school leavers cohort: linkage of education data to routinely collected records for mortality, hospital discharge and offspring birth characteristics | Peer-reviewed | Describes the data sources used to create the Scottish school leavers cohort and highlights the potential of this linked data resource. | Scotland |
25 | Symons, T. (2016) [40] | Datavores of Local Government: Using data to make services more personalised, effective and efficient | Grey literature | Discussion paper on how data can help councils provide more personalised, effective and efficient services. Part of the Local Datavores Research programme. | UK |
26 | Wistow, G. et al. (2016) [41] | Why Implementing Integrated Care is so much harder than designing it: experience in North West London. England | Peer-reviewed | Brief paper reporting on initial evaluation of an integrated care programme in North West London. | London |
27 | Witham, MD. et al. (2015) [42] | Construction of a linked health and social care database resource—Lessons on process, content and culture | Peer-reviewed | Article providing an overview of a successful data linkage process and discussion of potential barriers to executing such projects. | Scotland |
28 | Muirhead, A. et al. (2016) [43] | The Digital House of Care: information solutions for integrated care | Peer-reviewed | Article describing the development of a digital tool that can be used for integrated health and social care delivery. | Derbyshire |