Abstract
BackgroundThe 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.MethodsFocus 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.ResultsThe 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.ConclusionsAlthough 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.
Highlights
The use of electronic patient records for medical research is extremely topical
Idea that the Clinical Practice Research Datalink (CPRD) is presented as a benign and bureaucratic imperative which will produce benefits at both individual and societal levels, the processes involved in the collection of electronic patient records for research contradict with centrally held values of information governance and consent causing problems for implementation
The CPRD combines learning from the GPRD and the Health Research Support Service (HRSS) pilot
Summary
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. 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. The CPRD is ideologically driven leaving questions around the acceptability of implementing and integrating the necessary processes to enable electronic patient records to be used for the purposes of research unresolved. The stated aim of the CPRD is to maximise the way anonymised NHS clinical data can be linked to enable observational research and deliver research outputs that are beneficial to improving and safeguarding public health (http://www.cprd.com/intro.asp). Overall coverage of existing databases used for health services and epidemiological research (General Practice Research Database (GPRD), The Health Improvement Network (THIN), QRESEARCH, IMS Mediplus system) is estimated to be only about 20% of NHS patients and focuses on primary healthcare data, with limited linkage to other records. Less than 0.5% of patients from these practices have opted out of their records being included
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