Summary Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to esta... more Summary Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to ...
ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sha... more ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sharing through Electronic Health Records (EHRs). It uses a model structured around different aspects of trust in the healthcare organisation’s reasons for greater data-sharing and their ability to execute EHR projects, particularly any associated confidentiality controls. It reflects the individual’s personal circumstances and attitude to use of health records. This model is extended by considering the relative gains and risks from greater data-sharing as viewed by population segments to give a range of ‘attitudes’: positive, negative, ambivalent/marginal, or contingent. The model is compared with results from a recent literature survey by the authors published by the UK General Medical Council (GMC) on Public and Professional Attitudes to Privacy. Various policy options are considered which may modify attitudes to make the proposal more or less attractive to patients, recognising that there are those that have little to gain or will always view the proposition of EHRs negatively, and that time and experience may be needed to resolve doubts. The paper does not consider legal questions of privacy and medical confidentiality, although the authors are very familiar with these, preferring to focus on how to meet public expectations and concerns.
ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sha... more ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sharing through Electronic Health Records (EHRs). It uses a model structured around different aspects of trust in the healthcare organisation’s reasons for greater data-sharing and their ability to execute EHR projects, particularly any associated confidentiality controls. It reflects the individual’s personal circumstances and attitude to use of health records. This model is extended by considering the relative gains and risks from greater data-sharing as viewed by population segments to give a range of ‘attitudes’: positive, negative, ambivalent/marginal, or contingent. The model is compared with results from a recent literature survey by the authors published by the UK General Medical Council (GMC) on Public and Professional Attitudes to Privacy. Various policy options are considered which may modify attitudes to make the proposal more or less attractive to patients, recognising that there are those that have little to gain or will always view the proposition of EHRs negatively, and that time and experience may be needed to resolve doubts. The paper does not consider legal questions of privacy and medical confidentiality, although the authors are very familiar with these, preferring to focus on how to meet public expectations and concerns.
The CLEF project aims to establish a secure socio-technical framework that enables sharing patien... more The CLEF project aims to establish a secure socio-technical framework that enables sharing patient data for the purposes of research whilst maintaining patient privacy and confidentiality. The value of shared data is increased by integrating, within a secure repository, both existing structured information (lab reports etc) with information extracted from texts (clinic letters), and using clinical inferencing and filtering techniques
CLEF (Co-operative Clinical e-Science Framework) is an MRC sponsored project in the e- Science pr... more CLEF (Co-operative Clinical e-Science Framework) is an MRC sponsored project in the e- Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. It is developing methods for managing and using pseudonymised repositories of the long-term patient histories which can be linked to genetic, genomic information or used
CLEF is an MRC sponsored project in the E-Science programme that aims to establish policies and i... more CLEF is an MRC sponsored project in the E-Science programme that aims to establish policies and infrastructure for the next generation of integrated clinical and bioscience research. One of the major goals of the project is to provide a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies are needed to ensure
Summary Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to esta... more Summary Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to ...
ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sha... more ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sharing through Electronic Health Records (EHRs). It uses a model structured around different aspects of trust in the healthcare organisation’s reasons for greater data-sharing and their ability to execute EHR projects, particularly any associated confidentiality controls. It reflects the individual’s personal circumstances and attitude to use of health records. This model is extended by considering the relative gains and risks from greater data-sharing as viewed by population segments to give a range of ‘attitudes’: positive, negative, ambivalent/marginal, or contingent. The model is compared with results from a recent literature survey by the authors published by the UK General Medical Council (GMC) on Public and Professional Attitudes to Privacy. Various policy options are considered which may modify attitudes to make the proposal more or less attractive to patients, recognising that there are those that have little to gain or will always view the proposition of EHRs negatively, and that time and experience may be needed to resolve doubts. The paper does not consider legal questions of privacy and medical confidentiality, although the authors are very familiar with these, preferring to focus on how to meet public expectations and concerns.
ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sha... more ABSTRACT This paper considers issues of trust and privacy in healthcare around increased data-sharing through Electronic Health Records (EHRs). It uses a model structured around different aspects of trust in the healthcare organisation’s reasons for greater data-sharing and their ability to execute EHR projects, particularly any associated confidentiality controls. It reflects the individual’s personal circumstances and attitude to use of health records. This model is extended by considering the relative gains and risks from greater data-sharing as viewed by population segments to give a range of ‘attitudes’: positive, negative, ambivalent/marginal, or contingent. The model is compared with results from a recent literature survey by the authors published by the UK General Medical Council (GMC) on Public and Professional Attitudes to Privacy. Various policy options are considered which may modify attitudes to make the proposal more or less attractive to patients, recognising that there are those that have little to gain or will always view the proposition of EHRs negatively, and that time and experience may be needed to resolve doubts. The paper does not consider legal questions of privacy and medical confidentiality, although the authors are very familiar with these, preferring to focus on how to meet public expectations and concerns.
The CLEF project aims to establish a secure socio-technical framework that enables sharing patien... more The CLEF project aims to establish a secure socio-technical framework that enables sharing patient data for the purposes of research whilst maintaining patient privacy and confidentiality. The value of shared data is increased by integrating, within a secure repository, both existing structured information (lab reports etc) with information extracted from texts (clinic letters), and using clinical inferencing and filtering techniques
CLEF (Co-operative Clinical e-Science Framework) is an MRC sponsored project in the e- Science pr... more CLEF (Co-operative Clinical e-Science Framework) is an MRC sponsored project in the e- Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. It is developing methods for managing and using pseudonymised repositories of the long-term patient histories which can be linked to genetic, genomic information or used
CLEF is an MRC sponsored project in the E-Science programme that aims to establish policies and i... more CLEF is an MRC sponsored project in the E-Science programme that aims to establish policies and infrastructure for the next generation of integrated clinical and bioscience research. One of the major goals of the project is to provide a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies are needed to ensure
Uploads
Papers by P. Singleton