TY - JOUR
T1 - Hunter disease eClinic
T2 - Interactive, computer-assisted, problem-based approach to independent learning about a rare genetic disease
AU - Al-Jasmi, Fatma
AU - Moldovan, Laura
AU - Clarke, Joe Tr
N1 - Funding Information:
Software authoring: Fatma Al-Jasmi, MBBS, FRCPC, FCCMG (SickKids, unfunded executive & scientific producer): initial project groundwork, scientific research and presentation (Overview, Clinical, Management, Investigation), ‘independent learning’ virtual clinic idea & logistics Joe T.R Clarke, MD, PhD, FRCPC, FCCMG (SickKids, unfunded producer executive & scientific producer): project initiation/vision - as a training resource, planning and guidance, evaluation logistics, reviewer Laura Moldovan, BSc (Hon), BIF, (SickKids, grant funded project contribution scientific & digital producer): systems thinking project virtual planning and idea, sci-art concept design & development, animation & digital art, research and presentation (Genetics, Biochemistry, ERT) Hossam Abdel-Hamid, BSc, MCP (Horus Technology Services, contract funded): software authoring and developer for coding eClinic quiz/ evaluation, programming optimization Scientific review & contribution: Dr. John W Callahan (Paediatric Laboratory Medicine, SickKids, volunteer contribution): Biochemistry Dr. Tracy Stockley (Paediatric Laboratory Medicine, SickKids, volunteer contribution): Genetics, Investigation Dr. Julian Raiman (Staff physician, SickKids, volunteer contribution): Clinical, Investigation, Management Carolina Azcona (Genetic counsellor, University Health Network, grant funded contribution): Genetic Counselling Support: Linda Vorano (LSRG Group, SickKids, volunteer contribution): patient voice, language enhancement Margaret A. Mackrell, RN, BHScN (LSRG Group, SickKids, volunteer contribution): Guide voice & clinical dialogue enhancement Jennifer Conley (Global Medical Affairs, Shire, volunteer contribution): HOS writer Karen Tam ScM (Genetic counsellor, SickKids, volunteer contribution): Genetic counselling Merna Atiyah, MD (Cardiologist, SickKids, volunteer contribution): Hunter patient echo Janice Nicholson (Public Affairs, SickKids, volunteer contribution): overall review and communications Jeri Danyleyko (RI Web @ Public Affairs, SickKids, volunteer contribution): Web version server set-up Luke Itani (Graphic Centre, SickKids, grant funded): boy art drawings (eBook, Clinical chapter) Sebastian Latham (Co-op student, Don Mills CI, volunteer contribution): Hunter boy art, CD artwork/graphics Mihai Veres (Volunteer student, York University, volunteer contribution): CD graphics layout and help with preparation for print Avatars provided by: SitePal - http://www.oddcast.com We would also like to thank to Aydah Al Bloushi and Ahmed Osman (Summer volunteering/student, Dubai) for helping Fatma Al-Jasmi creating a virtual clinic prototype. Although never used, that work helped in planning this project.
PY - 2010
Y1 - 2010
N2 - Background. Computer-based teaching (CBT) is a well-known educational device, but it has never been applied systematically to the teaching of a complex, rare, genetic disease, such as Hunter disease (MPS II). Aim. To develop interactive teaching software functioning as a virtual clinic for the management of MPS II. Implementation and Results. The Hunter disease eClinic, a self-training, user-friendly educational software program, available at the Lysosomal Storage Research Group (http://www.lysosomalstorageresearch.ca), was developed using the Adobe Flash multimedia platform. It was designed to function both to provide a realistic, interactive virtual clinic and instantaneous access to supporting literature on Hunter disease. The Hunter disease eClinic consists of an eBook and an eClinic. The eClinic is the interactive virtual clinic component of the software. Within an environment resembling a real clinic, the trainee is instructed to perform a medical history, to examine the patient, and to order appropriate investigation. The program provides clinical data derived from the management of actual patients with Hunter disease. The eBook provides instantaneous, electronic access to a vast collection of reference information to provide detailed background clinical and basic science, including relevant biochemistry, physiology, and genetics. In the eClinic, the trainee is presented with quizzes designed to provide immediate feedback on both trainee effectiveness and efficiency. User feedback on the merits of the program was collected at several seminars and formal clinical rounds at several medical centres, primarily in Canada. In addition, online usage statistics were documented for a 2-year period. Feedback was consistently positive and confirmed the practical benefit of the program. The online English-language version is accessed daily by users from all over the world; a Japanese translation of the program is also available. Conclusions. The Hunter disease eClinic employs a CBT model providing the trainee with realistic clinical problems, coupled with comprehensive basic and clinical reference information by instantaneous access to an electronic textbook, the eBook. The program was rated highly by attendees at national and international presentations. It provides a potential model for use as an educational approach to other rare genetic diseases.
AB - Background. Computer-based teaching (CBT) is a well-known educational device, but it has never been applied systematically to the teaching of a complex, rare, genetic disease, such as Hunter disease (MPS II). Aim. To develop interactive teaching software functioning as a virtual clinic for the management of MPS II. Implementation and Results. The Hunter disease eClinic, a self-training, user-friendly educational software program, available at the Lysosomal Storage Research Group (http://www.lysosomalstorageresearch.ca), was developed using the Adobe Flash multimedia platform. It was designed to function both to provide a realistic, interactive virtual clinic and instantaneous access to supporting literature on Hunter disease. The Hunter disease eClinic consists of an eBook and an eClinic. The eClinic is the interactive virtual clinic component of the software. Within an environment resembling a real clinic, the trainee is instructed to perform a medical history, to examine the patient, and to order appropriate investigation. The program provides clinical data derived from the management of actual patients with Hunter disease. The eBook provides instantaneous, electronic access to a vast collection of reference information to provide detailed background clinical and basic science, including relevant biochemistry, physiology, and genetics. In the eClinic, the trainee is presented with quizzes designed to provide immediate feedback on both trainee effectiveness and efficiency. User feedback on the merits of the program was collected at several seminars and formal clinical rounds at several medical centres, primarily in Canada. In addition, online usage statistics were documented for a 2-year period. Feedback was consistently positive and confirmed the practical benefit of the program. The online English-language version is accessed daily by users from all over the world; a Japanese translation of the program is also available. Conclusions. The Hunter disease eClinic employs a CBT model providing the trainee with realistic clinical problems, coupled with comprehensive basic and clinical reference information by instantaneous access to an electronic textbook, the eBook. The program was rated highly by attendees at national and international presentations. It provides a potential model for use as an educational approach to other rare genetic diseases.
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U2 - 10.1186/1472-6920-10-72
DO - 10.1186/1472-6920-10-72
M3 - Article
C2 - 20973983
AN - SCOPUS:77958147733
SN - 1472-6920
VL - 10
JO - BMC medical education
JF - BMC medical education
IS - 1
M1 - 72
ER -