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Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population

BACKGROUND: The British Household Panel Survey (BHPS) is the first long-running UK longitudinal survey with a non-medical focus and a sample covering the whole age range to have asked for permission to link to a range of administrative health records. This study determines whether informed consent l...

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Autores principales: Knies, Gundi, Burton, Jonathan, Sala, Emanuela
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2012
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3330014/
https://www.ncbi.nlm.nih.gov/pubmed/22390416
http://dx.doi.org/10.1186/1472-6963-12-52
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author Knies, Gundi
Burton, Jonathan
Sala, Emanuela
author_facet Knies, Gundi
Burton, Jonathan
Sala, Emanuela
author_sort Knies, Gundi
collection PubMed
description BACKGROUND: The British Household Panel Survey (BHPS) is the first long-running UK longitudinal survey with a non-medical focus and a sample covering the whole age range to have asked for permission to link to a range of administrative health records. This study determines whether informed consent led to selection bias and reflects on the value of the BHPS linked with health records for epidemiological research. METHODS: Multivariate logistical regression is used, with whether the respondent gave consent to data linkage or not as the dependent variable. Independent variables were entered as four blocks; (i) a set of standard demographics likely to be found in most health registration data, (ii) a broader set of socio-economic characteristics, (iii) a set of indicators of health conditions and (iv) information about the use of health services. RESULTS: Participants aged 16-24, males and those living in England were more likely to consent. Consent is not biased with respect to socio-economic characteristics or health. Recent users of GP services are underrepresented among consenters. CONCLUSIONS: Whilst data could only be linked for a minority of BHPS participants, the BHPS offers a great range of information on people's life histories, their attitudes and behaviours making it an invaluable source for epidemiological research.
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spelling pubmed-33300142012-04-20 Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population Knies, Gundi Burton, Jonathan Sala, Emanuela BMC Health Serv Res Research Article BACKGROUND: The British Household Panel Survey (BHPS) is the first long-running UK longitudinal survey with a non-medical focus and a sample covering the whole age range to have asked for permission to link to a range of administrative health records. This study determines whether informed consent led to selection bias and reflects on the value of the BHPS linked with health records for epidemiological research. METHODS: Multivariate logistical regression is used, with whether the respondent gave consent to data linkage or not as the dependent variable. Independent variables were entered as four blocks; (i) a set of standard demographics likely to be found in most health registration data, (ii) a broader set of socio-economic characteristics, (iii) a set of indicators of health conditions and (iv) information about the use of health services. RESULTS: Participants aged 16-24, males and those living in England were more likely to consent. Consent is not biased with respect to socio-economic characteristics or health. Recent users of GP services are underrepresented among consenters. CONCLUSIONS: Whilst data could only be linked for a minority of BHPS participants, the BHPS offers a great range of information on people's life histories, their attitudes and behaviours making it an invaluable source for epidemiological research. BioMed Central 2012-03-05 /pmc/articles/PMC3330014/ /pubmed/22390416 http://dx.doi.org/10.1186/1472-6963-12-52 Text en Copyright ©2012 Knies et al; licensee BioMed Central Ltd. http://creativecommons.org/licenses/by/2.0 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
spellingShingle Research Article
Knies, Gundi
Burton, Jonathan
Sala, Emanuela
Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title_full Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title_fullStr Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title_full_unstemmed Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title_short Consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
title_sort consenting to health record linkage: evidence from a multi-purpose longitudinal survey of a general population
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3330014/
https://www.ncbi.nlm.nih.gov/pubmed/22390416
http://dx.doi.org/10.1186/1472-6963-12-52
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