Patient Information, Consent and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders Mohamed BEN SAID a, 1, , Laurence ROBEL b, Claude MESSIAEN a, Yann CRAUS b, Jean Philippe JAIS a , Bernard GOLSE b, Paul LANDAIS c a) Paris Descartes University, Faculty of Medicine, Department of Biostatistics and Medical Informatics, APHP - Necker Enfants Malades Hospital, Paris, France b) Department of Child Psychiatry APHP - Necker Enfants Malades Hospital, Paris, France c) Laboratoire de Biostatistiques, Epidémiologie, Santé Publique et Informatique Médicale (BESPIM) ! CHU de Nîmes - Hôpital Carémeau – Nîmes- France Corresponding author : mohamed.ben-said@ext.parisdescartes.fr
Introduction (1) Pervasive Developmental Disorder (PDD) also called Autism Spectrum Disorder (ASD) Association of disorders : • difficulties to communicate • impaired social interactions • restricted, repetitive and stereotypes of behavioral patterns • presence or not of intellectual disability Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Introduction (2) • Affects young children 3 years and + • Frequent association with neurological & organic disorders suggests a multifactorial etiology. • Clinical diagnosis: expert assessment in child-psychiatry and medical specialties (genetics, neurology, radiology,....) Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Medical expert centers for ASD’ patients Approximatively 600 ASD’ patients / year are • assessed in the 9 expert centers in the Ile-de- France region. The ASD’ patients assessment data flow raised the need for an information management system. Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Aims to support medical, researchers and public health communities in: improving knowledge about psychopathological, physio-pathological and etiological processes related to ASD, through systematic data collection of initial and longitudinal assessments of ASD’ patients at the 9 ASD’ expert centers. Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Issues: Authorizations & Ethical Issues Applications : Advisory Council for Information Processing • in the Domain of Health Research (CCTIRS), related to the Ministry of Higher Education and Research National Commission Computing and • Freedom (CNIL) Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Issues: Authorizations & Ethical Issues CCTIRS : Recommendations - Patient information and consents . Project research objectives, . Patient’ right to amend personal information . Consent to participate in the research protocol, . Authorization to use former test results (medical specialties and genetics) - Confidentiality : privacy and personal data protection scheme and server storage Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Requested functionalities from the users Directly manage patient personal information in a human readable form to link and check reliably clinical data How conciliate the requested functionalities with the recommendations of CCTIRS to preserve privacy and personal information Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Literature (1) – Information, Consent 1973 – Report of the US Secretary of Health Education and Welfare Advisory Committee on • Automated Personal Data System Individual rights to find out what was recorded ... If used for its original purpose ... right to amend identifiable information.. 2001 – Regulation (EC) N° 45/2001 of the • European Parliament and of the Council on the protection of individuals with regards to the processing of personal data by the Community institutions and bodies and on free movement of such data Law framework for protecting personal data and privacy, criteria for making data processing legitimate, … Data protection Officer… Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Literature (2) – Confidentiality [15] Chenglang Lu · ZongdaWu · Mingyong Liu · Wei Chen · JunfangGuo, A Patient Privacy Protection Scheme for Medical Information System, J Med Syst (2013) 37:9982, pp 1-10 . Patient privacy infringement may occur at the server side which makes the server untrusted. The authors suggest a privacy scheme on the client side and save encrypted results on the server side. [16] ! JavaScrypt:+Browser1Based+Cryptography+Tools High&security!data!encryp2on!solu2on!which!runs!en2rely in!the!Web!browser.!h9p://www.fourmilab.ch/javascrypt/ ! Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Methods – Information, consents Counselling from the University Privacy Officer Patient information notice : Research objectives, data control access, confidentiality scheme, data use in future research projects, recipients, CNIL authorization, right to amend, acceptance or refusal will not affect patient care. Non-opposition consent the participant is not opposed to the secondary use of medical data collected for a different purpose than the current research. Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Methods – Privacy Protection Scheme (1) Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Methods – Privacy Protection Scheme (2) Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Results – Encrypting solution Data retrieval is based on the TEDIS-patient-ID Personal information encryption / decryption programs are fully functional for update, retrieval and link patient’ personal information to the appropriate clinical data Decryption display on the Web browser are fast and transparent to the end-user either for individual patient record or for a list of [149] patients (<5 milliseconds) Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Results – Overall solution Patient information notice modifications • Consents • Control access Procedures • Privacy protection scheme • Confidentiality policy • were approved by the Privacy Officer at the Juridical Affairs Office of the University Paris Descartes . TEDIS application was accepted by the CCTIRS Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Discussion / Conclusion Personal Information encryption prevents from using phonetics to anticipate detecting potential duplicates Data Protection Officer is emerging into • organizations which manage personal and private data particularly in health care settings. The European Directives tend to create the • function of Delegate to the Protection of Data and to systematize the DPO recruit. http://ec.europa.eu/dataprotectionofficer/index_en.htm Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
Thanks Corresponding author : mohamed.ben-said@ext.parisdescartes.fr ! Patient Information, Consents and Privacy Protection Scheme for an Information System Dedicated to Pervasive Developmental Disorders
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