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Testing Sensory and Multisensory Function in Children with Autism Spectrum Disorder
Published on: April 22, 2015
Strengthening Data Confidentiality and Integrity Protection in the Context of a Multi-Centric Information System
Mohamed Ben Said1, Laurence Robel2, Bernard Golse2
1Paris Descartes University, Faculty of Medicine, Department of Biostatistics and Medical Informatics, APHP - Necker Enfants Malades Hospital, Paris, France.
Insights
A new information system, TEDIS, was developed to manage autism spectrum disorder (ASD) patient data. It ensures secure, multi-center data collection and protects patient privacy through robust security policies and infrastructure.
Area of Science:
- Neuroscience
- Public Health
- Information Systems
Background:
- Autism spectrum disorders (ASD) are complex neuro-developmental conditions requiring multidisciplinary diagnostic approaches.
- Effective management of ASD patient data is crucial for research, clinical practice, and public health decision-making.
- Existing data collection methods may lack the systematic, exhaustive, and continuous multi-center capabilities needed for comprehensive ASD care.
Purpose of the Study:
- To develop and present the security policy and infrastructure for TEDIS, an information system designed for autism spectrum disorder (ASD) patient data management.
- To ensure the protection of patient privacy and clinical information within a multi-center data collection framework.
- To validate the security measures through testing in a controlled environment.
Main Methods:
- Development of a comprehensive security policy encompassing governance, ethics, user access control, and patient privacy.
- Implementation of technical security infrastructure, including encryption and decryption solutions.
- Systematic and exhaustive multi-center patient data collection via secured internet connections.
- Testing of security solutions within a local secured intranet environment.
Main Results:
- The TEDIS information system was designed for systematic, exhaustive, and continuous multi-center ASD patient data collection.
- A robust security policy was established, addressing governance, consent, access control, and privacy protection.
- Security infrastructure, including advanced encryption, was implemented and tested.
- Testing demonstrated fluid functionality with consistent, transparent, and safe encrypting-decrypting results, ensuring ASD patient privacy.
Conclusions:
- The TEDIS information system provides a secure and efficient platform for managing multi-center ASD patient data.
- The implemented security policy and infrastructure effectively protect patient privacy and clinical information.
- TEDIS is poised for deployment in nine expert assessment centers, enhancing ASD research and care.
Abstract:
Autism spectrum disorders (ASD) are complex neuro-developmental disorders affecting children in early age. Diagnosis relies on multidisciplinary investigations, in psychiatry, neurology, genetics, electrophysiology, neuro-imagery, audiology, and ophthalmology. To support clinicians, researchers, and public health decision makers, we developed an information system dedicated to ASD, called TEDIS. It was designed to manage systematic, exhaustive and continuous multi-centric patient data collection via secured internet connections. TEDIS will be deployed in nine ASD expert assessment centers in Ile-DeFrance district. We present security policy and infrastructure developed in context of TEDIS to protect patient privacy and clinical information. TEDIS security policy was organized around governance, ethical and organisational chart-agreement, patients consents, controlled user access, patients' privacy protection, constrained patients' data access. Security infrastructure was enriched by further technical solutions to reinforce ASD patients' privacy protection. Solutions were tested on local secured intranet environment and showed fluid functionality with consistent, transparent and safe encrypting-decrypting results.
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