health data governance - global health care stories from around the world ... pathway &...

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

Contact: jillian.oderkirk@oecd.org

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