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The use of electronic patient records for medical research: conflicts and contradictions

BACKGROUND: The use of electronic patient records for medical research is extremely topical. The Clinical Practice Research Datalink (CRPD), the English NHS observational data and interventional research service, was launched in April 2012. The CPRD has access to, and facilities to link, many health...

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Autor principal: Stevenson, Fiona
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4391599/
https://www.ncbi.nlm.nih.gov/pubmed/25886266
http://dx.doi.org/10.1186/s12913-015-0783-6
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author Stevenson, Fiona
author_facet Stevenson, Fiona
author_sort Stevenson, Fiona
collection PubMed
description BACKGROUND: The use of electronic patient records for medical research is extremely topical. The Clinical Practice Research Datalink (CRPD), the English NHS observational data and interventional research service, was launched in April 2012. The CPRD has access to, and facilities to link, many healthcare related datasets. The CPRD is partially based on learning from the Health Research Support Service (HRSS), which was used to test the technical and practical aspects of downloading and linking electronic patient records for research. Questions around the feasibility and acceptability of implementing and integrating the processes necessary to enable electronic patient records to be used for the purposes of research remain. METHODS: Focus groups and interviews were conducted with a total of 50 patients and 7 staff from the two English GP practices involved in piloting the HRSS, supplemented with 11 interviews with key stakeholders. Emergent themes were mapped on to the constructs of normalization process theory (NPT) to consider the ways in which sense was made of the work of implementing and integrating the HRSS. RESULTS: The NPT analysis demonstrated a lack of commitment to, and engagement with, the HRSS on the part of patients, whilst the commitment of doctors and practice staff was to some extent mitigated by concerns about issues of governance and consent, particularly in relation to downloading electronic patient records with associated identifiers. CONCLUSIONS: Although the CPRD is presented as a benign, bureaucratic process, perceptions by patients and staff of inherent contradictions with centrally held values of information governance and consent in downloading and linking electronic patient records for research remains a barrier to implementation. It is likely that conclusions reached about the problems of balancing the contradictions inherent in sharing what can be perceived as a private resource for the public good are globally transferrable.
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spelling pubmed-43915992015-04-10 The use of electronic patient records for medical research: conflicts and contradictions Stevenson, Fiona BMC Health Serv Res Research Article BACKGROUND: The use of electronic patient records for medical research is extremely topical. The Clinical Practice Research Datalink (CRPD), the English NHS observational data and interventional research service, was launched in April 2012. The CPRD has access to, and facilities to link, many healthcare related datasets. The CPRD is partially based on learning from the Health Research Support Service (HRSS), which was used to test the technical and practical aspects of downloading and linking electronic patient records for research. Questions around the feasibility and acceptability of implementing and integrating the processes necessary to enable electronic patient records to be used for the purposes of research remain. METHODS: Focus groups and interviews were conducted with a total of 50 patients and 7 staff from the two English GP practices involved in piloting the HRSS, supplemented with 11 interviews with key stakeholders. Emergent themes were mapped on to the constructs of normalization process theory (NPT) to consider the ways in which sense was made of the work of implementing and integrating the HRSS. RESULTS: The NPT analysis demonstrated a lack of commitment to, and engagement with, the HRSS on the part of patients, whilst the commitment of doctors and practice staff was to some extent mitigated by concerns about issues of governance and consent, particularly in relation to downloading electronic patient records with associated identifiers. CONCLUSIONS: Although the CPRD is presented as a benign, bureaucratic process, perceptions by patients and staff of inherent contradictions with centrally held values of information governance and consent in downloading and linking electronic patient records for research remains a barrier to implementation. It is likely that conclusions reached about the problems of balancing the contradictions inherent in sharing what can be perceived as a private resource for the public good are globally transferrable. BioMed Central 2015-03-29 /pmc/articles/PMC4391599/ /pubmed/25886266 http://dx.doi.org/10.1186/s12913-015-0783-6 Text en © Stevenson; licensee BioMed Central. 2015 This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.
spellingShingle Research Article
Stevenson, Fiona
The use of electronic patient records for medical research: conflicts and contradictions
title The use of electronic patient records for medical research: conflicts and contradictions
title_full The use of electronic patient records for medical research: conflicts and contradictions
title_fullStr The use of electronic patient records for medical research: conflicts and contradictions
title_full_unstemmed The use of electronic patient records for medical research: conflicts and contradictions
title_short The use of electronic patient records for medical research: conflicts and contradictions
title_sort use of electronic patient records for medical research: conflicts and contradictions
topic Research Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4391599/
https://www.ncbi.nlm.nih.gov/pubmed/25886266
http://dx.doi.org/10.1186/s12913-015-0783-6
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