health data governance - global health care stories from around the world ... pathway &...
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HEALTH DATA GOVERNANCEPragmatic Approaches to Breach Prevention & Management
Jillian OderkirkOECD Health Division 11 May 2016 Health DatapaloozaWashington, DC
Drivers of data use in health care
Tight fiscal conditionsput pressure on health systems to deliver value for money
Increasingly complex care
needsmake delivering
high quality care more challenging1100101011000011
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New therapies and better researchrely on our ability to make better use of data
Patient demandsfor modern
experiences, responsiveness,
communications and transparency
Data needed to make progress
Data
must
describe
Pathways
Processes
Outcomes
Costs
Key prerequisites
• Individual patients /
person level
• Follow patients
through cycle of care
• Link to outcomes
Data linkageleverages the value of
data to answer specific
questions
Electronic health
records (EHRs)are a very useful basis
for big data collection in
heath
Success stories from around the world
Clalit (Israel)Using analytics to reduce admissions in older patients
THL (Finland)Public indicators to improve the quality of hospital care
UK BiobankBroad and deep data to prevent, diagnose and treat diseases
FDA (US)Post-market surveillance of medical technology to improve safety
• Most countries have national data covering the key elements of the health care pathway & processes
• Often data are in silos
• Few countries are linking across databases for research or to improve the quality of care
– Most work has a long history, i.e. cancer
– Innovation in a few countries
• 18 countries plan to extract data from clinical records for analysis
But many countries are not there yet
Little linkage and quality monitoring beyond hospital data & cancer registries
Countries’ views about what will happen in the next five years vary
7
Very likely Canada SpainFinland United Kingdom*
Indonesia* United StatesLikely Belgium* Japan
Estonia* NetherlandsFrance NorwayIceland Poland*Ireland Portugal*Israel SingaporeItaly Slovakia*
Unsure Denmark Slovenia*Korea Sweden
New Zealand SwitzerlandUnlikely Mexico*Very unlikely Austria* Germany*
Czech Republic Turkey* 2012Source: OECD HCQI Country Survey, 2013/14
Set up the right data governance to maximise benefits and minimise risks
1 Health information system
2 Legal framework
3 Public communication plan
4 Certification or
accreditation of processors
5 Project approval process
6 Data de‐identification steps
7 Data security and
management
8 Data governance review
cycle
8 key mechanismsEvaluate benefits and risks of proposed data uses
• Rights to health• Societal values toward
health
• health care quality &
efficiency
• scientific discovery &
innovation
Benefits
• Rights to privacy• Societal trust in
government & institutions• Societal values toward
privacy & sharing data
Risks
Take informed
decisions to
process
personal
health data
The eight key data governance mechanisms
The eight key data governance mechanisms
OECD is working to move this agenda forward
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Further reading
Thank you
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