Table 2 Included studies and characteristics
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 |