Linking clinical datasets in UK

what are the reported problems?

Y. M. Hopf, C. Bond

Research output: Contribution to conferencePoster

Abstract

Objectives
To use the published literature to: establish the use and purpose of clinical databases in the UK and the extent of data-linkage across datasets; summarise problems with data linkage.
Methods
A systematic approach to literature searching was used to identify papers reporting the use of clinical databases in pharmaco-vigilance projects. A second search was conducted to identify papers describing problems (technical, legal, ethical) resulting from data-linkage for pharmaco-vigilance. A MeSH term and free text search was performed in Medline and EMBASE, covering in-process and other non-indexed citations from 1950 to present. Results were limited to English language and humans. Abstracts were reviewed and citation lists were hand searched. Opinion pieces were included. Further information on databases identified from this search was obtained through general search engines identifying their websites.
Results
More than 140 different databases were identified, holding information on the actual or potential recipient of health care in the UK, ranging from census data through disease registries to primary care databases. Data linkage is seen as advantageous, especially for pharmaco-vigilance purposes as it provides a fuller clinical picture of patients treated than any single dataset. Limitations observed were missing or duplicated data, potentially conflicting data, observer bias and data protection.
Conclusion
Clinical databases are useful in pharmaco-vigilance. Linking data between datasets to create a larger cohort happens occasionally for specific purposes but is not currently routine. Problems reported include legal, ethical and practical requirements and have been acknowledged in a recent Wellcome Trust report. No publication has been found where the attitudes of health professionals to the linkage and use of routine clinical data have been explored. It remains unclear to what extent hospital doctors, GPs, or other health-care-professionals would support the linkage of data between primary and secondary care for research purposes including pharmaco-vigilance.
Original languageEnglish
Pages650-651
Number of pages2
DOIs
Publication statusPublished - Jun 2010
EventDrug Utilisation Research Group (DURG) UK & Ireland - London, United Kingdom
Duration: 4 Feb 20104 Feb 2010

Conference

ConferenceDrug Utilisation Research Group (DURG) UK & Ireland
CountryUnited Kingdom
CityLondon
Period4/02/104/02/10

Cite this

Hopf, Y. M., & Bond, C. (2010). Linking clinical datasets in UK: what are the reported problems?. 650-651. Poster session presented at Drug Utilisation Research Group (DURG) UK & Ireland, London, United Kingdom. https://doi.org/10.1002/pds.1950

Linking clinical datasets in UK : what are the reported problems? / Hopf, Y. M.; Bond, C.

2010. 650-651 Poster session presented at Drug Utilisation Research Group (DURG) UK & Ireland, London, United Kingdom.

Research output: Contribution to conferencePoster

Hopf, YM & Bond, C 2010, 'Linking clinical datasets in UK: what are the reported problems?' Drug Utilisation Research Group (DURG) UK & Ireland, London, United Kingdom, 4/02/10 - 4/02/10, pp. 650-651. https://doi.org/10.1002/pds.1950
Hopf YM, Bond C. Linking clinical datasets in UK: what are the reported problems?. 2010. Poster session presented at Drug Utilisation Research Group (DURG) UK & Ireland, London, United Kingdom. https://doi.org/10.1002/pds.1950
Hopf, Y. M. ; Bond, C. / Linking clinical datasets in UK : what are the reported problems?. Poster session presented at Drug Utilisation Research Group (DURG) UK & Ireland, London, United Kingdom.2 p.
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abstract = "ObjectivesTo use the published literature to: establish the use and purpose of clinical databases in the UK and the extent of data-linkage across datasets; summarise problems with data linkage. MethodsA systematic approach to literature searching was used to identify papers reporting the use of clinical databases in pharmaco-vigilance projects. A second search was conducted to identify papers describing problems (technical, legal, ethical) resulting from data-linkage for pharmaco-vigilance. A MeSH term and free text search was performed in Medline and EMBASE, covering in-process and other non-indexed citations from 1950 to present. Results were limited to English language and humans. Abstracts were reviewed and citation lists were hand searched. Opinion pieces were included. Further information on databases identified from this search was obtained through general search engines identifying their websites.ResultsMore than 140 different databases were identified, holding information on the actual or potential recipient of health care in the UK, ranging from census data through disease registries to primary care databases. Data linkage is seen as advantageous, especially for pharmaco-vigilance purposes as it provides a fuller clinical picture of patients treated than any single dataset. Limitations observed were missing or duplicated data, potentially conflicting data, observer bias and data protection.ConclusionClinical databases are useful in pharmaco-vigilance. Linking data between datasets to create a larger cohort happens occasionally for specific purposes but is not currently routine. Problems reported include legal, ethical and practical requirements and have been acknowledged in a recent Wellcome Trust report. No publication has been found where the attitudes of health professionals to the linkage and use of routine clinical data have been explored. It remains unclear to what extent hospital doctors, GPs, or other health-care-professionals would support the linkage of data between primary and secondary care for research purposes including pharmaco-vigilance.",
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N2 - ObjectivesTo use the published literature to: establish the use and purpose of clinical databases in the UK and the extent of data-linkage across datasets; summarise problems with data linkage. MethodsA systematic approach to literature searching was used to identify papers reporting the use of clinical databases in pharmaco-vigilance projects. A second search was conducted to identify papers describing problems (technical, legal, ethical) resulting from data-linkage for pharmaco-vigilance. A MeSH term and free text search was performed in Medline and EMBASE, covering in-process and other non-indexed citations from 1950 to present. Results were limited to English language and humans. Abstracts were reviewed and citation lists were hand searched. Opinion pieces were included. Further information on databases identified from this search was obtained through general search engines identifying their websites.ResultsMore than 140 different databases were identified, holding information on the actual or potential recipient of health care in the UK, ranging from census data through disease registries to primary care databases. Data linkage is seen as advantageous, especially for pharmaco-vigilance purposes as it provides a fuller clinical picture of patients treated than any single dataset. Limitations observed were missing or duplicated data, potentially conflicting data, observer bias and data protection.ConclusionClinical databases are useful in pharmaco-vigilance. Linking data between datasets to create a larger cohort happens occasionally for specific purposes but is not currently routine. Problems reported include legal, ethical and practical requirements and have been acknowledged in a recent Wellcome Trust report. No publication has been found where the attitudes of health professionals to the linkage and use of routine clinical data have been explored. It remains unclear to what extent hospital doctors, GPs, or other health-care-professionals would support the linkage of data between primary and secondary care for research purposes including pharmaco-vigilance.

AB - ObjectivesTo use the published literature to: establish the use and purpose of clinical databases in the UK and the extent of data-linkage across datasets; summarise problems with data linkage. MethodsA systematic approach to literature searching was used to identify papers reporting the use of clinical databases in pharmaco-vigilance projects. A second search was conducted to identify papers describing problems (technical, legal, ethical) resulting from data-linkage for pharmaco-vigilance. A MeSH term and free text search was performed in Medline and EMBASE, covering in-process and other non-indexed citations from 1950 to present. Results were limited to English language and humans. Abstracts were reviewed and citation lists were hand searched. Opinion pieces were included. Further information on databases identified from this search was obtained through general search engines identifying their websites.ResultsMore than 140 different databases were identified, holding information on the actual or potential recipient of health care in the UK, ranging from census data through disease registries to primary care databases. Data linkage is seen as advantageous, especially for pharmaco-vigilance purposes as it provides a fuller clinical picture of patients treated than any single dataset. Limitations observed were missing or duplicated data, potentially conflicting data, observer bias and data protection.ConclusionClinical databases are useful in pharmaco-vigilance. Linking data between datasets to create a larger cohort happens occasionally for specific purposes but is not currently routine. Problems reported include legal, ethical and practical requirements and have been acknowledged in a recent Wellcome Trust report. No publication has been found where the attitudes of health professionals to the linkage and use of routine clinical data have been explored. It remains unclear to what extent hospital doctors, GPs, or other health-care-professionals would support the linkage of data between primary and secondary care for research purposes including pharmaco-vigilance.

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