Enabling Data Linkage to Maximise the Value of Public Health Research ...

Public Health Research Data Forum

Enabling Data Linkage to Maximise the Value of Public Health Research Data: full report

March 2015

Enabling data linkage to maximise the value of public health research data

Final report to The Wellcome Trust

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Acknowledgements

This research was undertaken by a project team, whose membership was as follows: University of the West of England, United Kingdom (Faculty of Business and Law) Elizabeth Green , Research Associate, Bristol Business School Felix Ritchie, Associate Professor of Applied Economics, Bristol Business School Don Webber, Professor of Applied Economics, Bristol Business School University of the West of England, United Kingdom (Faculty of Health and Applied Sciences) Julie Mytton, Associate Professor in Child Health, Centre for Child and Adolescent Health Toity Deave, Associate Professor in Family and Child Health, Centre for Child and Adolescent Health University of Cape Town, South Africa Alex Montgomery, Research Associate, DataFirst Lynn Woolfrey, Manager, DataFirst Centre for Injury Prevention Research Bangladesh Kamran ul-Baset, Senior Scientist, CIPRB and Associate Director, RTi research centre Salim Chowdhury, Director of Training and Education, CIPRB, and PhD fellow at the Department of Public Health Sciences, Karolinska Institutet

The project benefited greatly from the support and advice of Jane Simmonds and David Carr at the Wellcome Trust, particularly in the reporting stages. We are grateful to those who agreed to be interviewed for this report, formally and informally. The views and opinions expressed in this report are those of the authors, and do not necessarily represent the views of the Wellcome Trust, the Public Health Research Data Forum, or any other body. Errors and omissions in the interpretation of research findings or interviews remain the responsibility of the authors.

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Contents

Executive Summary................................................................................................................................. 5 Part I: Background to the project............................................................................................................ 9

1. Introduction ................................................................................................................................ 9 2. Project strategy ......................................................................................................................... 11

2.1 Research questions ........................................................................................................... 11 2.2 Research strategy..............................................................................................................11 2.3 Project team......................................................................................................................12 3. Data linking in literature ........................................................................................................... 13 3.1 Basics of data linking.........................................................................................................13 3.2 The value of data linking ................................................................................................... 16 3.3 Problems with data linking ............................................................................................... 17 Part 2: Findings ..................................................................................................................................... 24 4. Responses from interviews and case studies ........................................................................... 24 4.1 Introduction ...................................................................................................................... 24 4.2 Conceptual concerns.........................................................................................................24 4.3 Contextual concerns ......................................................................................................... 29 4.4 Practical concerns ............................................................................................................. 34 4.5 Ways forward .................................................................................................................... 37 Part 3 Conclusion and recommendations.............................................................................................38 5. Summary of findings ................................................................................................................. 38 5.1 Broad conclusions ............................................................................................................. 38 5.2 Response to initial questions ............................................................................................ 39 6. Recommendations .................................................................................................................... 42 6.1 Recommendations and rationale......................................................................................42 6.2 Timing................................................................................................................................45 Annex A: Overview of relevant literature ............................................................................................. 47 A1. Concepts in data linking ........................................................................................................ 47 A1.1 Identifiers and identification.............................................................................................47 A1.2 Types of data linking ......................................................................................................... 48 A1.3 Characteristics of types of data ........................................................................................ 52 A2. The value of data linking ....................................................................................................... 54 A2.1 Increasing the range of feasible topic areas ..................................................................... 55

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A2.2 Providing the historical context or control ....................................................................... 56 A2.3 Improving the statistical basis........................................................................................... 57 A2.4 Improved use of scarce resources .................................................................................... 59 A3. Problems of linking data ....................................................................................................... 60 A3.1 Statistical issues ................................................................................................................ 61 A3.2 Technical and operational aspects of data linking............................................................62 A3.3 Institutional aspects of data linking .................................................................................. 68 A3.4 Aspects of data linking: summary ..................................................................................... 77 Annex B: Data collection strategy ......................................................................................................... 78 B1. Literature search ................................................................................................................... 78 B2. Interview strategy ................................................................................................................. 80 B3. Interviewees..........................................................................................................................81 Annex C: case studies............................................................................................................................83 C1. ALSPAC (The Avon Longitudinal Study of Parents and Children)..........................................84 C2. SAIL (Secure Anonymised Information Linkage), UK ............................................................ 87 C3. Scottish Longitudinal Study (SLS), UK ................................................................................... 90 C4. Data linking, Sweden.............................................................................................................93 C5. Analysing Longitudinal Population-based HIV/AIDS data on Africa (ALPHA) Network ........ 95 C6. Western Cape Department of Health, South Africa ............................................................. 99 C7. The Agincourt Health and Socio-Demographic Surveillance System (HDSS), South Africa 104 C8. INDEPTH Network, Africa/Asia/Oceania ............................................................................. 107 C9. CHeReL (Centre for health record linkage) , Australia ........................................................ 109 C10. The Bangladesh Demographic and Health Survey (BDHS), Bangladesh ............................. 112 C11. Data linking at the Bangladesh Bureau of Statistics ........................................................... 114

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