A Flexible Parental Engaged Consent Model for the Secondary Use of Their Infant's Physiological Data in the Neonatal Intensive Care Context

Choi, Y; McGregor, C

A Flexible Parental Engaged Consent Model for the Secondary Use of Their Infant's Physiological Data in the Neonatal Intensive Care Context

Choi, Y McGregor, C

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Publication Type:: Conference Proceeding
Citation:: Proceedings - 2017 IEEE International Conference on Healthcare Informatics, ICHI 2017, 2017, pp. 502 - 507
Issue Date:: 2017-09-08

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Field	Value	Language
dc.contributor.author	Choi, Y	en_US
dc.contributor.author	McGregor, C https://orcid.org/0000-0002-0491-4403	en_US
dc.date.issued	2017-09-08	en_US
dc.identifier.citation	Proceedings - 2017 IEEE International Conference on Healthcare Informatics, ICHI 2017, 2017, pp. 502 - 507	en_US
dc.identifier.isbn	9781509048816	en_US
dc.identifier.uri	http://hdl.handle.net/10453/126145
dc.description.abstract	© 2017 IEEE. The secondary use of health data, especially the use of physiological data for research holds many opportunities for improving the current understanding of neonatal conditions. As a neonate is unable to provide their consent regarding participation in research studies, a substitute decision maker (SDM) must provide parental or legal guardian consent. However it has been well documented that there are many emotional, mental and physical challenges associated with the parental consent process in the neonatal intensive care unit (NICU). It is proposed that a flexible parental engaged consent model could help alleviate some of these issues by providing parents with the ability to choose and change their clinical engagement level preference for their infant's participation in research at their convenience at any point in time. In this paper, an extension to Service based Multidimensional Temporal Data Mining Framework (STDMn0) to allow for the functionality of flexible patient or surrogate consent is presented based on the use of a flexible consent model initially proposed by Heath [1]. This functionality is demonstrated via an example implementation for a generic retrospective research study in the NICU setting.	en_US
dc.relation.ispartof	Proceedings - 2017 IEEE International Conference on Healthcare Informatics, ICHI 2017	en_US
dc.relation.isbasedon	10.1109/ICHI.2017.88	en_US
dc.title	A Flexible Parental Engaged Consent Model for the Secondary Use of Their Infant's Physiological Data in the Neonatal Intensive Care Context	en_US
dc.type	Conference Proceeding
utslib.for	0806 Information Systems	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Faculty of Engineering and Information Technology
pubs.organisational-group	/University of Technology Sydney/Faculty of Engineering and Information Technology/School of Computer Science
utslib.copyright.status	closed_access
pubs.publication-status	Published	en_US

Abstract:

© 2017 IEEE. The secondary use of health data, especially the use of physiological data for research holds many opportunities for improving the current understanding of neonatal conditions. As a neonate is unable to provide their consent regarding participation in research studies, a substitute decision maker (SDM) must provide parental or legal guardian consent. However it has been well documented that there are many emotional, mental and physical challenges associated with the parental consent process in the neonatal intensive care unit (NICU). It is proposed that a flexible parental engaged consent model could help alleviate some of these issues by providing parents with the ability to choose and change their clinical engagement level preference for their infant's participation in research at their convenience at any point in time. In this paper, an extension to Service based Multidimensional Temporal Data Mining Framework (STDMn0) to allow for the functionality of flexible patient or surrogate consent is presented based on the use of a flexible consent model initially proposed by Heath [1]. This functionality is demonstrated via an example implementation for a generic retrospective research study in the NICU setting.

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http://hdl.handle.net/10453/126145