WMA-HDB-Seoul_WONG

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Monash University Malaysia is jointly owned by Monash University and the Jeffrey Cheah Foundation
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
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Presentation
§ Malaysia Ethics Governance
§ Monash Ethics Governance
§ Challenges in Healthcare
§ IT revolution in healthcare
§ Malaysia Initiatives
§ Ethical issues encountered
§ Discussion
28th February 2011Presentation title 2
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
28th February 2011Presentation title 3
Malaysia Ethics Governance
Private
Public
(MOH)
MREC
IEC / IRB
Institution
Monash
Malaysia
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Monash Malaysia Ethics Governance
28th February 2011Presentation title 4
Private MOH
Monash
Australia
University
Sunway MC
Tropicana MC
Australian National Statement
on ethical conduct in human
research
MREC
IEC IRB
Institution
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Monash Malaysia Ethics set up
28th February 2011Presentation title 5
Private MOH
Monash
Australia
Reciprocal approval
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost and sustainability
– Population explosion
– Aging population
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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Healthcare expenditure
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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148
79
24
503
12 13 13
93
33 16 11
185
1 148
280
45
785
25 30 27
149
49 28 29
0
200
400
600
800
1 000
1 200
Healthcare Expenditure
APAC Countries, 2013-2020
9.3 5.7 4.4 3.0 10.5 4.1 4.5 4.9 7.8 6.6 4.0 6.6
Healthcare Expenditure as % of GDP (2013)
VietnamTaiwan ThailandSouth
Korea
SingaporePhilippinesMalaysiaJapanIndonesiaIndiaChinaAustralia
2020
2013
USDBillions
Percentage (%)
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost
§ Current healthcare ecosystem
Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Current healthcare ecosystem
Chee Piau Wong
Disease &
pt based
Government
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost
§ Current health care ecosystem
§ Accessibility and availability
Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Chee Piau Wong
Demand for and supply of rehabilitation services for children with head injury
within Selangor and Wilayah Persekutuan Kuala Lumpur
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2
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost
§ Current health care ecosystem
§ Accessibility and availability
§ Scattering of medical information
Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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Sources of
Healthcare Data
Mobile phone
Application
Healthcare
wearables
Remote monitoring
devices
Medical imaging
Electronic Medical
Record
Outsourcing
Pharma and Life
Science research
Insurance
Public databases
Social media
Sources of health data
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost
§ Current healthcare model
§ Accessibility and availability
§ Scattering of medical information
§ IT lag
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
IT Revolution
Chee Piau Wong 17
Craftsmanship Industrialisation Digitalisation
IndustryMedicine
IoT IoE
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
IT Revolution
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Craftsmanship Industrialisation Digitalisation
IndustryMedicine
IoT IoE
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Progression in IoT
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Components / Devices
Application
Communication
Data Storage (Cloud)
Data Analysis
Connected
Healthcare
Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Problems
§ Healthcare cost
§ Current healthcare model
§ Accessibility and availability
§ Scattering of medical information
§ Predictive analysis
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Chee Piau Wong
Demand for and supply of rehabilitation services for children with head injury
within Selangor and Wilayah Persekutuan Kuala Lumpur
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2
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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
22Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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NCD-CVS
NCD-Diabetic
Growth&Dev.
ElderlyCare
Rehabilitation
CD-Dengue
Wellness
CD-Malaria
Common Library
Reference Model
Common Architecture
PHR Database
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Hub
EMR
API
Interface
Virtual
Rehab
Epilepsy
NCD
Infectious
Disease
HIS
EMR – Electronic Medical Record
HIS – Hospital information system
Growth &
Dev-m
Ecosystem
Clinical
Registries
Wellness
TB
Dengue
Cancer
Heart /
CVS
Diabetes
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Personal
Health
Record
EMR
API
Interface
Virtual
Rehab
Epilepsy
NCD
Infectious
Disease
HIS
EMR – Electronic Medical Record
HIS – Hospital information system
Growth &
Develop
Ecosystem
Clinical
Registries
Wellness
TB
Dengue
Cancer
Heart /
CVS
Diabetes
Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Personal
&
Family
Physical
growthDev
surveillance
Growth
&
Development Vaccination
Health
Information
Weight
Head
circumference
Height
Digitisation of
growth chart
Childhood
Language
Disorder
Malaysian growth
chart
Lifestyle change &
Growth pattern
Demographic
progression
Child Health
Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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 andcommunity
27Chee Piau Wong
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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 thedatabases
§ Ethical hurdle
– Prediction of malignant condition – to inform or not to inform
– Medical insurance
28Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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
28th February 2011Presentation title 29
Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
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
30Chee Piau Wong
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Monas h Univ ersity Malaysiais jointly ownedby Monas hUniv ersity andtheJ effrey CheahFoundation
Thank you