Dr Kerina Jones
Associate Professor
Swansea University Medical School
Telephone: (01792) 602764

Kerina Jones is an Associate Professor of Health Informatics at the College of Medicine. She is part of the senior management team of the Secure Anonymised Information Linkage (SAIL) system, and leads the Governance initiatives to ensure data protection and to maximise data utility. She has led the development of successful bids to extend the SAIL system and to secure research grants. She is a co-investigator on the centre grant for CIPHER: the Centre for the Improvement of Population Health through Erecords Research, and leads the Innovative Governance workstream for the Farr Institute of Health Informatics Research. She is a co-investigator on the centre grant for CADRE: the Centre for Administrative Data Research & Evaluation, one of four Administrative Data Research Centres (ADRCs) in the UK. Within this she holds the position of Associate Director for Data and Methodologies. She also leads the Public Involvement and Engagement in data linkage research workstream for SAIL, CIPHER and CADRE. As part of this work, she established an active Consumer Panel for data linkage research.

Kerina is engaged in many projects that bring together disparate sources of data to enhance research and enable new types of studies to be conducted, and has a keen interest in the development of innovative disease registers. She leads the flagship UK Multiple Sclerosis Register, the data model for which brings together clinical data, routinely-collected data and a wealth of patient-reported data to create new knowledge about MS. With an academic background in Biochemistry, she is also particularly interested in projects where laboratory data can be linked to routinely collected health related records to create rich datasets for research. She is actively publishing research and methodology articles.

Areas of Expertise

  • Data linkage: research
  • Data linkage: methodologies and governance
  • Information governance for data-intensive research

Publications

  1. & Assessing the medium-term impact of a home-visiting programme on child maltreatment in England: protocol for a routine data linkage study. BMJ Open 7(7), e015728
  2. & The other side of the coin: harm due to the non-use of health-related data. International Journal for Population Data Science 1(1)
  3. & Data safe havens to combine health and genomic data: benefits and challenges. International Journal for Population Data Science 1(1)
  4. & Data Safe Havens and Trust: Toward a Common Understanding of Trusted Research Platforms for Governing Secure and Ethical Health Research. JMIR Medical Informatics 4(2), e22
  5. & The UK Secure eResearch Platform for public health research: a case study. The Lancet 388, S62
  6. & Dangers from Within? Looking Inwards at the Role of Maladministration as the Leading Cause of Health Data Breaches in the UK. In Data Protection and Privacy: (In)visibilities and Infrastructures. -239). Springer.
  7. & Physical Disability, Anxiety and Depression in People with MS: An Internet-Based Survey via the UK MS Register. PLoS ONE 9(8), e104604
  8. & The other side of the coin: Harm due to the non-use of health-related data. 97, 43-51.
  9. & (2014). A review of evidence relating to harm resulting from uses of health and biomedical data. A report to the Nuffield Council on Bioethics working party on biological and health data, and the Wellcome Trust’s expert advisory group on data access.
  10. & Factors associated with low fitness in adolescents – A mixed methods study. BMC Public Health 14(1), 764
  11. & Local modelling techniques for assessing micro-level impacts of risk factors in epidemiological data: Understanding health and socioeconomic inequalities in childhood educational attainments. PLoS One
  12. & Care.data: why are Scotland and Wales doing it differently?. BMJ 348(g2384)
  13. & A case study of the Secure Anonymous Information Linkage (SAIL) Gateway: a privacy-protecting remote access system for health-related research and evaluation. Journal of Biomedical Informatics
  14. & Involving consumers in the work of a data linkage research unit. International Journal of Consumer Studies 38(1), 45-51.
  15. & Response to Fujita et al.. The American Journal of Gastroenterology 109(1), 138-139.
  16. & Outcome measures for Multiple Sclerosis: A review. Physical Therapy Reviews
  17. & The Physical and Psychological Impact of Multiple Sclerosis Using the MSIS-29 via the Web Portal of the UK MS Register. PLoS ONE 8(1), e55422
  18. & Identifying and Addressing the Barriers to the Use of an Internet-Register for Multiple Sclerosis. International Journal of Healthcare Information Systems and Informatics 8(1), 1-16.
  19. & Desirability and expectations of the UK MS Register: Views of people with MS. International Journal of Medical Informatics 82(11), 1104-1110.
  20. & Incidence of Campylobacter and Salmonella Infections Following First Prescription for PPI: A Cohort Study Using Routine Data. The American Journal of Gastroenterology 108(7), 1094-1100.
  21. & Qualitative research within trials: developing a standard operating procedure for a clinical trials unit. Trials 14(1), 54
  22. & How People with Multiple Sclerosis Rate Their Quality of Life: An EQ-5D Survey via the UK MS Register. PLoS ONE 8(6), e65640
  23. & Sources of Discovery, Reasons for Registration, and Expectations of an Internet-Based Register for Multiple Sclerosis. International Journal of Healthcare Information Systems and Informatics 7(3), 27-43.
  24. & Development and use of a privacy-protecting total population record linkage system to support observational, interventional, and policy relevant research. The Lancet 380, S6
  25. & Cohort Profile: The Housing Regeneration and Health Study. International Journal of Epidemiology
  26. & The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS. BMC Medical Informatics and Decision Making 12(1), 73
  27. & A Large-Scale Study of Anxiety and Depression in People with Multiple Sclerosis: A Survey via the Web Portal of the UK MS Register. PLoS ONE 7(7), e41910

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Supervision

  • Living with Multiple Sclerosis and Anxiety: Determining reasons for anxiety amongst people with MS and possible methods of support (current)

    Student name:
    MRes
    Other supervisor: Dr Kerina Jones
  • 'Implementation of the Electronic Health Record systems in the Primary Healthcare Centres in Saudi Arabia' (current)

    Student name:
    PhD
    Other supervisor: Dr Gareth Noble
    Other supervisor: Dr Melanie Healy
    Other supervisor: Dr Kerina Jones
  • The development and evaluation of a second-generation assessment tool to evaluate medicines online information. (current)

    Student name:
    PhD
    Other supervisor: Dr Gareth Noble
    Other supervisor: Dr Kerina Jones
    Other supervisor: Dr Melanie Healy