Creating a health informatics data resource for hearing health research.

Humans United Kingdom Medical Informatics Electronic Health Records Biomedical Research Audiometry, Pure-Tone
Data sharing Database Hearing health

Journal

BMC medical informatics and decision making
ISSN: 1472-6947
Titre abrégé: BMC Med Inform Decis Mak
Pays: England
ID NLM: 101088682

Informations de publication

Date de publication:
29 Jul 2024
Historique:
received: 19 11 2023
accepted: 25 06 2024
medline: 30 7 2024
pubmed: 30 7 2024
entrez: 29 7 2024
Statut: epublish

Résumé

The National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health has been established in the UK to curate routinely collected hearing health data to address research questions. This study defines priority research areas, outlines its aims, governance structure and demonstrates how hearing health data have been integrated into a common data model using pure tone audiometry (PTA) as a case study. After identifying key research aims in hearing health, the governance structure for the NIHR HIC for Hearing Health is described. The Observational Medical Outcomes Partnership (OMOP) was chosen as our common data model to provide a case study example. The NIHR HIC Hearing Health theme have developed a data architecture outlying the flow of data from all of the various siloed electronic patient record systems to allow the effective linkage of data from electronic patient record systems to research systems. Using PTAs as an example, OMOPification of hearing health data successfully collated a rich breadth of datapoints across multiple centres. This study identified priority research areas where routinely collected hearing health data could be useful. It demonstrates integration and standardisation of such data into a common data model from multiple centres. By describing the process of data sharing across the HIC, we hope to invite more centres to contribute and utilise data to address research questions in hearing health. This national initiative has the power to transform UK hearing research and hearing care using routinely collected clinical data.

Sections du résumé

BACKGROUND BACKGROUND
The National Institute of Health and Social Care Research (NIHR) Health Informatics Collaborative (HIC) for Hearing Health has been established in the UK to curate routinely collected hearing health data to address research questions. This study defines priority research areas, outlines its aims, governance structure and demonstrates how hearing health data have been integrated into a common data model using pure tone audiometry (PTA) as a case study.
METHODS METHODS
After identifying key research aims in hearing health, the governance structure for the NIHR HIC for Hearing Health is described. The Observational Medical Outcomes Partnership (OMOP) was chosen as our common data model to provide a case study example.
RESULTS RESULTS
The NIHR HIC Hearing Health theme have developed a data architecture outlying the flow of data from all of the various siloed electronic patient record systems to allow the effective linkage of data from electronic patient record systems to research systems. Using PTAs as an example, OMOPification of hearing health data successfully collated a rich breadth of datapoints across multiple centres.
CONCLUSION CONCLUSIONS
This study identified priority research areas where routinely collected hearing health data could be useful. It demonstrates integration and standardisation of such data into a common data model from multiple centres. By describing the process of data sharing across the HIC, we hope to invite more centres to contribute and utilise data to address research questions in hearing health. This national initiative has the power to transform UK hearing research and hearing care using routinely collected clinical data.

Identifiants

DOI: 10.1186/s12911-024-02589-x PMID: 39075459
pubmed: 39075459
doi: 10.1186/s12911-024-02589-x
pii: 10.1186/s12911-024-02589-x
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

209

Informations de copyright

© 2024. The Author(s).

Références

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Auteurs

Nishchay Mehta (N)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Royal National ENT Hospital, UCLH Trust, London, UK.

Baptiste Briot Ribeyre (BB)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Institute of Health Informatics, Faculty of Population Health Sciences, University College London, London, UK.

Lilia Dimitrov (L)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Royal National ENT Hospital, UCLH Trust, London, UK.

Louise J English (LJ)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Institute of Health Informatics, Faculty of Population Health Sciences, University College London, London, UK.

Colleen Ewart (C)

NIHR Health Informatics Collaborative Hearing Health, Patient and Public Engagement Group, London, UK.

Antje Heinrich (A)

NIHR Manchester Biomedical Research Centre, Manchester, UK.
Manchester Centre for Audiology and Deafness (ManCAD), School of Health Sciences, The University of Manchester, Manchester, UK.

Nikhil Joshi (N)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Royal National ENT Hospital, UCLH Trust, London, UK.

Kevin J Munro (KJ)

NIHR Manchester Biomedical Research Centre, Manchester, UK.
Manchester Centre for Audiology and Deafness (ManCAD), School of Health Sciences, The University of Manchester, Manchester, UK.

Gail Roadknight (G)

Oxford University Hospitals NHS Foundation Trust: Oxford, Oxfordshire, UK.

Luis Romao (L)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Institute of Health Informatics, Faculty of Population Health Sciences, University College London, London, UK.

Anne Gm Schilder (AG)

NIHR University College London Hospitals Biomedical Research Centre, London, UK.
Royal National ENT Hospital, UCLH Trust, London, UK.

Ruth V Spriggs (RV)

NIHR Biomedical Research Centre, School of Medicine, University of Nottingham, Nottingham, UK.
Mental Health and Clinical Neurosciences, School of Medicine, University of Nottingham, Nottingham, UK.

Ruth Norris (R)

NIHR Manchester Biomedical Research Centre, Manchester, UK.
Centre for Health Informatics, School of Health Sciences, The University of Manchester, Manchester, UK.

Talisa Ross (T)

NIHR University College London Hospitals Biomedical Research Centre, London, UK. Talisaross@doctors.org.uk.
Royal National ENT Hospital, UCLH Trust, London, UK. Talisaross@doctors.org.uk.
Nottingham Audiology Services, Nottingham University Hospitals, Nottingham, UK. Talisaross@doctors.org.uk.

George Tilston (G)

NIHR Manchester Biomedical Research Centre, Manchester, UK.
Centre for Health Informatics, School of Health Sciences, The University of Manchester, Manchester, UK.

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