HEALTH DATA GOVERNANCE IN OECD COUNTRIES PRIVACY, MONITORING AND - PowerPoint PPT Presentation

HEALTH DATA GOVERNANCE IN OECD COUNTRIES – PRIVACY, MONITORING AND RESEARCH EU Bridge Health Meeting 21 September 2017 Jillian.Oderkirk@oecd.org

Culmination of 6 years’ work …. OECD Guidelines Governing the Protection of Privacy and Transborder Flows of Personal Data [C(80)58/FINAL as amended by C(2013)79]

Drivers of Data Use Tight fjscal Increasingly conditions complex care needs put pressure on health make delivering systems to high quality care deliver value more challenging 1 1 0 0 1 0 1 0 1 1 0 0 0 for money 0 1 1 0 1 1 1 0 1 0 1 0 0 0 0 1 1 1 0 1 0 1 0 1 0 1 0 0 1 1 1 1 0 1 0 0 0 0 0 0 1 1 1 0 1 0 1 0 1 0 0 0 1 1 1 1 0 1 0 1 0 0 1 1 1 Patient demands New therapies for modern and better experiences, research responsiveness, rely on our communications ability to make and transparency better use of data

Data needed to make progress Pathways Data linkage Data Processes leverages the value of must data to answer specifjc describe Outcomes questjons Costs Electronic health Key prerequisites records (EHRs) • Individual patjents / Longitudinal record of person level treatments and • Follow patjents through outcomes cycle of care • Link to outcomes

Success stories Clinical practice System management improvement • THL (Finland): • Clalit (Israel): Public indicators to improve the quality of Analytics to reduce hospital care readmissions in older patients Surveillance Research and innovation • FDA (US): • UK Biobank: Post-market surveillance of medical technology to Broad and deep data improve safety to prevent, diagnose and treat diseases

And setbacks

OECD Study of Health Data Governance • Project of the Health Care Quality Indicators Expert Group in 2013/14 to: – Uncover and document governance practices and – Identify governance mechanisms to enable privacy-respectful data use • Guided by experts in law, privacy regulation, IT, policy, statistics, and research • 22 countries participated

Indicators monitored Dataset Dataset governance National health data governance Coverage Privacy ofgicer Privacy law Coding Training Data processing centre Collection method Dataset sharing Approval authority Regular HCQ Data breach incidents De-identifjcation reporting guidelines Identifjers De-identifjcation Challenges/difgiculties: Record linkage Access to data Data sharing • activity Approval process • Data access Secure • Extraction of EHR transfer/access data

Little data linkage in key areas Hospital in-patjent data Cancer registry data Mortality data Emergency health care data Mental hospital in-patjent data CVD registry data Record linkage to regularly monitor health care quality Prescriptjon medicines data and system performance Unique ID included and used Populatjon census/registry consistently Populatjon health survey data Natjonal personal health data available Formal long-term care data Primary care data Patjent reported outcomes Diabetes registry Patjent experiences survey data 0 5 10 15 20 25

13 countries regularly linking data across the pathway of care A B C D E Regularly linking Linking Linking Linking Linking datasets in hospital in-patient, datasets in A + datasets in A + datasets in A A + emergency cancer registry data prescription long-term care + primary care care data and mortality data medicines data data data Canada Canada Canada Canada Korea Czech Republic Israel Denmark Finland Singapore Denmark Korea Finland Israel UK (Wales) Finland New Zealand Korea Korea Israel Norway New Zealand Singapore Korea Singapore Sweden UK (Wales) UK (Scot. & New Zealand Sweden Wales) Norway UK Singapore Sweden UK (Eng., Scot. & Wales)

Study of the development and use of data from Electronic Health Record Systems • Project of the HCQI expert group in 2012 and 2016 to: – Monitor progress in the development and use of EHR systems including data governance and use for research and statjstjcs – 25 countries partjcipated in 2012 – 30 countries partjcipated in 2016

Indicators monitored EHR system EHR governance Data use Plans for development Natjonal organisatjon Dataset development and data use Electronic record Standards development Usability evaluatjon keeping Type of system Legal requirements for Analytjcal uses of data adoptjon/standards use Data sharing Vendor certjfjcatjon Vendor tools and controls Minimum dataset Incentjves Challenges/diffjcultjes: • Terminology standards Data quality Develop datasets • Identjfjers Laws/policies permittjng Implement EHR system statjstjcal or research uses • Patjent access Use of data for statjstjcs or research

10 are ready to extract data from EHRs for health care quality monitoring Data governance readiness High 3 3 3 2.5 2 2 2 2 2 2 2 2 1.5 1 1 1 1 1 1 1 1 0.5 0.5 0 0 0 0 0 0 0 Low Low High Technical and operatjonal readiness

Sharing and accessibility of data for research and statistics

Data sharing and accessibility Factors: # of countries Example country where where not permitued for all key permitued for any natjonal datasets natjonal dataset Identjfjable data is shared with 9 New Zealand 100% another natjonal data custodian or government entjty Access to de-identjfjed data: University/non-profjt researchers 2 Japan 100% may be approved For profjt businesses may be 7 Switzerland 100% approved Foreign government, university or 5 UK England and Scotland non-profjt researchers may be 100% approved

Data governance to maximise benefits and minimise risks Evaluate benefits and risks 8 key mechanisms of proposed data uses Benefjts 1 Health informatjon system • Rights to health • Societal values toward 2 Legal framework health • health care quality & 3 Public communicatjon plan effjciency Take informed • scientjfjc discovery & decisions to 4 Certjfjcatjon or innovatjon process accreditatjon of processors personal 5 Project approval process Risks health data • Rights to privacy • Societal trust in government 6 Data de-identjfjcatjon steps & instjtutjons • Societal values toward 7 Data security and management privacy & sharing data 8 Data governance review cycle

8 Key Data Governance Mechanisms 1 Coordinated development of high-value, e.g. Top health informatjon systems in privacy protectjve health informatjon Denmark, Finland, Iceland, Israel, New systems Zealand, Norway, Korea, Singapore, Sweden, and the United Kingdom (Wales and Scotland) 2 Legislatjve framework permits privacy- e.g. Sharing and accessibility of data is protectjve data use strongest in the UK, New Zealand, Sweden and USA 3 Open and transparent informatjon e.g. Finland and Iceland publish system that builds trust approval decisions for individual data linkage projects on a website 4 Accreditatjon/certjfjcatjon of data e.g. Australia and Scotland have processors to promote data security and accreditatjon for health data processors access that ensure high data protectjon standards are met

8 Key Data Governance Mechanisms 5 Transparent and fair project approval E.g. Nine countries provide a website processes where the approval process to access to de-identjfjed linked data is explained 6 Data de-identjfjcatjon practjces that E.g. The USA and UK consider the data consider “the big picture”: data security environment and the data use protectjon, security and utjlity when deciding the degree of data de- identjfjcatjon required. 7 Data security practjces that meet E.g. Secure, real-tjme, remote data access legal requirements and public systems are available in Canada (Ontario), expectatjons UK (Scotland and Wales), Netherlands & USA 8 Data governance practjces that are E.g. OECD is monitoring countries’ progress contjnuously assessed and renewed in strengthening their health informatjon infrastructure.

Rationale for an OECD Recommendation on Health Data Governance Using health data can advance health Using health data can advance health policy objectives policy objectives There are obstacles to using health data There are obstacles to using health data effectively in most countries effectively in most countries Better policy frameworks are needed to get Better policy frameworks are needed to get more out of health data more out of health data

Further reading Strengthening Health Information Infrastructure for Health Care Quality Governance - 2013 http://www.oecd.org/els/health-systems/strengthening-health-information -infrastructure.htm Health Data Governance: Privacy, Monitoring and Research, Health Policy Studies – OECD 2015 http://www.oecd.org/health/health-systems/health-data-governance-978 9264244566-en.htm Dementia Research and Care: Can Big Data Help? – OECD 2015 http://www.oecd.org/health/dementia.htm Data Driven Innovation for Growth and Well-Being – OECD 2015 http://www.oecd.org/sti/ieconomy/data-driven-innovation.htm