Ethics Considaration in Health Databases and Biobank
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1 Ethics Considaration in Health Databases and Biobank Associate Professor Dr Chee Piau WONG MBBS, MRCP, FRCPCH, PhD, CCST, AMM Jeffrey Cheah School of Medicine and Health Sciences Presentation Malaysia Ethics Governance Monash Ethics Governance Challenges in Healthcare IT revolution in healthcare Malaysia Initiatives Ethical issues encountered Discussion Presentation title 28th February
2 Malaysia Ethics Governance Private Monash Malaysia Public (MOH) IEC / IRB Institution MREC Presentation title 28th February Monash Malaysia Ethics Governance Monash Australia Australian National Statement on ethical conduct in human research Private MOH University Sunway MC Tropicana MC IEC IRB Institution MREC Presentation title 28th February
3 Monash Malaysia Ethics set up Monash Australia Private MOH Reciprocal approval Presentation title 28th February Problems Healthcare cost and sustainability Population explosion Aging population 3
4 Healthcare expenditure Healthcare Expenditure APAC Countries, Percentage (%) USD Billions Australia China India Indones ia Japan Malaysia Philippines Singapore South Korea Taiwan Thailand Vietnam Healthcare Expenditure as % of GDP (2013) 8 4
5 Problems Healthcare cost Current healthcare ecosystem Current healthcare ecosystem Government Disease & pt based 5
6 Problems Healthcare cost Current health care ecosystem Accessibility and availability Demand for and supply of rehabilitation services for children with head injury within Selangor and Wilayah Persekutuan Kuala Lumpur
7 Problems Healthcare cost Current health care ecosystem Accessibility and availability Scattering of medical information 7
8 Sources of health data Electronic Medical Record Insurance Mobile phone Application Healthcare wearables Medical imaging Sources of Healthcare Data Social media Pharma and Life Science research Outsourcing Public databases Remote monitoring devices 15 Problems Healthcare cost Current healthcare model Accessibility and availability Scattering of medical information IT lag 8
9 IT Revolution Craftsmanship Industrialisation Digitalisation IoT IoE Medicine Industry 17 IT Revolution Craftsmanship Industrialisation Digitalisation IoT IoE Medicine Industry 18 9
10 Progression in IoT Data Analysis Data Storage (Cloud) Communication Application Connected Healthcare Components / Devices 19 Problems Healthcare cost Current healthcare model Accessibility and availability Scattering of medical information Predictive analysis 10
11 Demand for and supply of rehabilitation services for children with head injury within Selangor and Wilayah Persekutuan Kuala Lumpur 22 2 Malaysia Initiatives Data warehousing Information Exchange Centralised PHR (Patient centred) Lifetime health record Industry Academia partnership Example Centralised Online telemedicine system Child Growth and Surveillance Virtual rehabilitation Cardiovascular disease 22 11
12 Growth & Dev. NCD-Diabetic NCD-CVS Elderly Care Rehabilitation CD-Dengue CD-Malaria Wellness Common Architecture Common Library Reference Model PHR Database 23 Ecosystem Interface Wellness Growth & Dev-m EMR HIS Epilepsy API Virtual Rehab Hub Infectious Disease TB Dengue Clinical Registries Diabetes NCD Heart / Cancer EMR Electronic Medical Record HIS Hospital information system CVS 12
13 Ecosystem Interface Wellness Growth & Develop EMR HIS Epilepsy API Virtual Rehab Personal Health Record Infectious Disease TB Dengue Clinical Registries Diabetes NCD Heart / Cancer EMR Electronic Medical Record HIS Hospital information system CVS Child Health Weight Dev surveillance Physical growth Height Digitisation of growth chart Health Information Personal & Family Growth & Development Childhood Language Disorder Head circumference Vaccination Malaysian growth chart Lifestyle change & Growth pattern Demographic progression 13
14 Issues encountered (additional) Hardware issue Patient centred mhealth? Mobile phone Funding public service vs research vs commercial Conflict of interest? Different interests of various stakeholders Legislation vs common sense Autonomy, empowerment Patient s ability to safeguard their own interest Confidentiality, security Medical Insurance Balance between Individual and community 27 Genetic in Paediatric Epilepsy Future classification and diagnosis of epilepsy? Each gene accounts for several epilepsy or epilepsy syndrome Each epilepsy or epilepsy syndrome has several different genetic abnormalities Disease may manifest only later. Need for re-identification Non-identification will reduce the usefulness of the databases Ethical hurdle Prediction of malignant condition to inform or not to inform Medical insurance 28 14
15 Telemedicine Development Group Inclusive group Medical practitioners, Researchers, Academics Industry, funders, Regulators, policy maker Facilitator Conference, innovation challenge, policy guidance Provide guidance and direction Governance structure Steering committee Director General of Ministry of Health Under the Prime Minister Department Presentation title 28th February Summary Increase emphasis on primary prevention and wellness Shift from remedial to wellness & preventive healthcare Telemedicine / Telehealth increasingly prominent Embracing Digitisation lead to data generation Big Data and Predictive analysis the future norm Balance between individuals and society Re-strategise ethical consideration 30 15
16 Thank you 16
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