What are the barriers to conducting international research using routinely collected primary care data?. de Lusignan, S., Pearce, C., Shaw, N. T., Liaw, S., Michalakidis, G., Vicente, M. T., Bainbridge, M., International (IMIA), European (EFMI) Medical Informatics Association, & Federation Primary Care Informatics Working Groups (PCI-WG) Studies in Health Technology and Informatics, 165:135–140, 2011.
abstract   bibtex   
BACKGROUND: Primary care is computerized with routine data recorded at the point or care. Secondary use of these data includes: genetic study, epidemiology and clinical trials. However, there are relatively few international studies. OBJECTIVE: To identify the concepts that might predict readiness to collaborate in international research using routinely collected primary care data METHOD: Literature review and data gathering exercise, from international Primary Care Informatics working group workshops, and email modified Delphi exercise. RESULTS: To establish whether primary care data are fit for use in a collaborative study information is needed at the micro-, meso-, and macro-level. At the micro- or data level we need to use documented standards for interoperability, computerized records, to facilitate linkage of data. At the meso-level we need to understand the nature of the electronic patient record (EPR) and specific study requirements. At the macro-level: health system, social and cultural context constrain what data are available. The framework defines the information needed at the point of expression of interest, and joining a study. The initial assessment of readiness should be by self-assessment followed by an in depth appraisal more immediately prior to the start of the study. Finally, a sensitivity analysis should be conducted to test the robustness of the data model. CONCLUSIONS: The literature focuses on technical issues: interoperability, EPR and modeling; the workshops on socio-cultural and organizational. This framework will form the basis for developing a survey instrument of the initial assessment of readiness for collaboration in international research.
@article{de_lusignan_what_2011,
	title = {What are the barriers to conducting international research using routinely collected primary care data?},
	volume = {165},
	issn = {0926-9630},
	abstract = {BACKGROUND: Primary care is computerized with routine data recorded at the point or care. Secondary use of these data includes: genetic study, epidemiology and clinical trials. However, there are relatively few international studies.
OBJECTIVE: To identify the concepts that might predict readiness to collaborate in international research using routinely collected primary care data
METHOD: Literature review and data gathering exercise, from international Primary Care Informatics working group workshops, and email modified Delphi exercise.
RESULTS: To establish whether primary care data are fit for use in a collaborative study information is needed at the micro-, meso-, and macro-level. At the micro- or data level we need to use documented standards for interoperability, computerized records, to facilitate linkage of data. At the meso-level we need to understand the nature of the electronic patient record (EPR) and specific study requirements. At the macro-level: health system, social and cultural context constrain what data are available. The framework defines the information needed at the point of expression of interest, and joining a study. The initial assessment of readiness should be by self-assessment followed by an in depth appraisal more immediately prior to the start of the study. Finally, a sensitivity analysis should be conducted to test the robustness of the data model.
CONCLUSIONS: The literature focuses on technical issues: interoperability, EPR and modeling; the workshops on socio-cultural and organizational. This framework will form the basis for developing a survey instrument of the initial assessment of readiness for collaboration in international research.},
	language = {eng},
	journal = {Studies in Health Technology and Informatics},
	author = {de Lusignan, Simon and Pearce, Christopher and Shaw, Nicola T. and Liaw, Siaw-Teng and Michalakidis, Georgios and Vicente, Marília T. and Bainbridge, Michael and {International (IMIA)} and {European (EFMI) Medical Informatics Association} and {Federation Primary Care Informatics Working Groups (PCI-WG)}},
	year = {2011},
	pmid = {21685599},
	keywords = {Data Collection, Delphi Technique, Education, Electronic Health Records, Humans, Internationality, Primary Health Care},
	pages = {135--140}
}

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