Lea, NC;
(2015)
Design and Development of a Knowledge Modelling Approach to Govern the Use of Electronic Health Records for Research.
Doctoral thesis , University of London.
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Abstract
There is now increasing commitment internationally to using electronic healthcare records collected during routine care delivery to conduct clinical research. This must be rigorously controlled by an extensive set of information governance requirements defining the legal, ethical and practical guidelines to respect the privacy rights of the people about whom the records are kept, uphold the clinical profession’s duty of confidentiality and protect the interests of participants, practitioners and researchers. The development of information security policies is a highly regarded method of meeting these requirements. This is hampered by the need to interpret a complex framework of legislation and guidelines, lack of clear advice and inconsistency in authoring, interpretation and understanding amongst the people whose behaviour they are expected to guide. By using the results of several UK and European research and information platform development projects in which the author has participated and by gathering requirements from stakeholders in the clinical and research communities, this thesis defines a knowledge management representation to specify policy requirements in a computable form. The work provides the first set of knowledge requirements for governing research uses of electronic healthcare records, and a knowledge model that describes information security policies and generates a web application tool. The tool allows policy control authoring that provides a consistent, clear and unambiguous view of governance requirements to researchers and service providers. The model and tool have been evaluated in a laboratory setting to explore their effects on behaviour and understanding of invited participants when authoring policy about handling healthcare records in research and making decisions about sharing information. The work has resulted in a validation of the model and demonstrated the potential positive effects of this new approach on practice. It makes recommendations about how it should be used in working practice and for educating people about information governance when performing clinical research to improve care provision.
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