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Understanding and responding to COVID-19 in Wales: protocol for a privacy-protecting data platform for enhanced epidemiology and evaluation of interventions
  1. Jane Lyons1,
  2. Ashley Akbari1,
  3. Fatemeh Torabi1,
  4. Gareth I Davies1,
  5. Laura North1,
  6. Rowena Griffiths1,
  7. Rowena Bailey1,
  8. Joseph Hollinghurst1,
  9. Richard Fry1,
  10. Samantha L Turner1,
  11. Daniel Thompson1,
  12. James Rafferty1,
  13. Amy Mizen1,
  14. Chris Orton1,
  15. Simon Thompson1,
  16. Lee Au-Yeung1,
  17. Lynsey Cross1,
  18. Mike B Gravenor2,
  19. Sinead Brophy1,
  20. Biagio Lucini1,
  21. Ann John1,
  22. Tamas Szakmany3,4,
  23. Jan Davies5,
  24. Chris Davies5,
  25. Daniel Rh Thomas6,
  26. Christopher Williams6,
  27. Chris Emmerson6,
  28. Simon Cottrell6,
  29. Thomas R Connor7,
  30. Chris Taylor8,
  31. Richard J Pugh9,
  32. Peter Diggle10,11,
  33. Gareth John12,
  34. Simon Scourfield12,
  35. Joe Hunt12,
  36. Anne M Cunningham12,
  37. Kathryn Helliwell13,
  38. Ronan Lyons1
  1. 1Population Data Science, Swansea University Medical School, Swansea, UK
  2. 2Institute of Life Sciences, Swansea University Medical School, Swansea, UK
  3. 3Department of Anaesthesia, Intensive Care and Pain Medicine, Division of Population Medicine, Cardiff University, Cardiff, UK
  4. 4Aneurin Bevan University Health Board, Newport, UK
  5. 5Members of the public, Swansea, UK
  6. 6Public Health Wales NHS Trust, Cardiff, Cardiff, UK
  7. 7School of Biosciences, Cardiff University, Cardiff, South Glamorgan, UK
  8. 8School of Social Sciences, Cardiff University, Cardiff, South Glamorgan, UK
  9. 9Glan Clwyd Hospital, Betsi Cadwaladr University Health Board, Rhyl, UK
  10. 10Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK
  11. 11Epidemiology and Population Health, University of Liverpool, Liverpool, Merseyside, UK
  12. 12NHS Wales Informatics Service, Cardiff, Wales, UK
  13. 13Welsh Government, Cardiff, Cardiff, UK
  1. Correspondence to Jane Lyons; j.lyons{at}swansea.ac.uk

Abstract

Introduction The emergence of the novel respiratory SARS-CoV-2 and subsequent COVID-19 pandemic have required rapid assimilation of population-level data to understand and control the spread of infection in the general and vulnerable populations. Rapid analyses are needed to inform policy development and target interventions to at-risk groups to prevent serious health outcomes. We aim to provide an accessible research platform to determine demographic, socioeconomic and clinical risk factors for infection, morbidity and mortality of COVID-19, to measure the impact of COVID-19 on healthcare utilisation and long-term health, and to enable the evaluation of natural experiments of policy interventions.

Methods and analysis Two privacy-protecting population-level cohorts have been created and derived from multisourced demographic and healthcare data. The C20 cohort consists of 3.2 million people in Wales on the 1 January 2020 with follow-up until 31 May 2020. The complete cohort dataset will be updated monthly with some individual datasets available daily. The C16 cohort consists of 3 million people in Wales on the 1 January 2016 with follow-up to 31 December 2019. C16 is designed as a counterfactual cohort to provide contextual comparative population data on disease, health service utilisation and mortality. Study outcomes will: (a) characterise the epidemiology of COVID-19, (b) assess socioeconomic and demographic influences on infection and outcomes, (c) measure the impact of COVID-19 on short -term and longer-term population outcomes and (d) undertake studies on the transmission and spatial spread of infection.

Ethics and dissemination The Secure Anonymised Information Linkage-independent Information Governance Review Panel has approved this study. The study findings will be presented to policy groups, public meetings, national and international conferences, and published in peer-reviewed journals.

  • COVID-19
  • epidemiology
  • public health
  • health informatics
https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

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Footnotes

  • Twitter @AshleyAkbari, @J_Hollinghurst, @richfry, @ProfAnnJohn, @iamyourgasman, @cpemmerson

  • Contributors All authors contributed to the conception and or design of aspects of the study. JL is the lead analyst for the Wales Multimorbidity Cohort creation and designed the data framework for the C20/C16 cohorts. JL, AA, FT, GID, LN, RG, RB, JH, RF, SLT, DT, JR, AM, CO, ST, LA-Y, TS, DRT, CE, TRC, CT, RJP, GJ, SS, JH, AMC created meta-data, prepared or linked data sources to create the cohort. JL, AA, FT, GID, LN, RG, RB, JH, RF, SLT, DT, JR, AM, CO, ST, LA-Y, LC, MBG, SB, BL, AJ, TS, JD, CD, DRT, CW, CE, SC, TRC, CT, RJP, PD, GJ, SS, JH, AMC, KH and RL contributed to the drafting of the manuscript and gave final approval of the version to be published. RL is the principle investigator and guarantor of the study.

  • Funding The WMC, on which components of this study are based, is funded by Health Data Research UK (HDR-9006) and the Medical Research Council (MR/S027750/1). Funding for the COVID-19 extension is through the Medical Research Council (MR/V028367/1). Health Data Research UK is funded by: UK Medical Research Council; Engineering and Physical Sciences Research Council; Economic and Social Research Council; National Institute for Health Research (England); Chief Scientist Office of the Scottish Government Health and Social Care Directorates; Health and Social Care Research and Development Division (Welsh Government); Public Health Agency (Northern Ireland); British Heart Foundation; and Wellcome.

  • Disclaimer The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the funding agencies, NHS organisations or Welsh Government.

  • Competing interests None declared.

  • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.