HEALTH INFORMATION INFRASTRUCTURE PROJECT: PROGRESS REPORT

Transcription

1 HEALTH INFORMATION INFRASTRUCTURE PROJECT: PROGRESS REPORT HCQI Expert Group Meeting 17 May 2013

2 Agenda to improve health information infrastructure» In 2010, health ministers called for improvement in national information infrastructure to provide the evidence base needed for health care quality and system performance improvements» Health Committee supported projects in 2011/12 and 2013/14 to strengthen health information systems Work to be guided by the Health Care Quality Indicators Expert Group (HCQI) 2

3 THE HCQI EXPERT GROUP INFORMATION INFRASTRUCTURE PROJECT IN

4 From data to evidence for health care improvement» Evidence about the outcomes of care for performance-based governance» Two key prerequisites» Collection and storage of data at the level of individual patients/persons» E.g. registries, administrative data, surveys» Capacity to follow patients through the cycle of care to relate care to outcomes» Often requires data linkage because few databases have all of the information needed» Could be based on electronic health records 4

5 Fact finding in 2011 and 2012» Survey of 20 countries on the use of personal health data to monitor health and health care quality to :» Understand the potential, the barriers and the best practices in the linkage of personal health data» Explore the privacy and data security environment» Survey of 25 countries development and use of personal health data from electronic health records» Found considerable cross-country variation linked to differences in risk-management in balancing data access and data privacy 5

6 Joint dialogue with experts in health and data privacy» HCQI and WPISP members met together on May 11, 2012» To begin to achieve a common understanding of privacy protection challenges in the use of personal health data» To identify potential joint international actions 6

7 Dissemination Health Policy Brief and preliminary report disseminated 2 April ormationinfrastructure.htm Final publication to be released in June

8 THE HCQI EXPERT GROUP INFORMATION INFRASTRUCTURE PROJECT IN

9 Next steps 1. Monitoring the development and use of personal health data for statistics and research:» A 2013 country survey of multiple sources of personal health data» A 2015 country survey of electronic health records 9

10 Next steps 2. Development of:» Categorisation of types and uses of data according to associated privacy, health and governance risks» Vocabulary to promote a common understanding of key terms» Good practices for privacy protection when processing data with different risks» Investigate: consent questions, data de-identification methods, secure data access modalities, project approval governance, data access governance 10

11 Proposed output The product of our effort would be:» An OECD publication in mid-2015» Describing the sources and uses of personal health data among countries» Describing the risks to health, to health system governance and to individual data privacy of data use and when data resources are not used» Describing good/promising practices to mitigate risk» Illustrating the real world application of these promising practices through case studies» The completeness and validity of the publication would be strengthened from the input of stakeholder communities gathered through surveys, interviews and a workshop 11

12 Purpose and audience Purpose of this report is to» Provide information about applying a risk management framework to decisions about data use» Support consistent and well-informed decisions about data protection in data use» Ensure that information about promising practices in data security and protection circulates widely» Encourage consideration of secondary data uses and data protection as new data sources become available Audience» Health ministries, privacy regulators, data custodians, data users (researchers, IT) 12

13 Advisory Panel of Experts Provide advice and guidance at all stages including:» Work plan» Instruments and techniques for the collection of evidence» Plans and modalities to consult with stakeholders» Conclusions and recommendations» Review of material for publication Drawn from health policy, statistics, research, privacy regulation, law, information technology, and civil society communities. Convened quarterly by Web-conferencing 13

14 Primary evidence gathering Current status within countries Survey of countries June-September 2013» National and sub-national data sources and uses» Data sharing» Data processing approval granting» Data access modalities» Open data initiatives» Use of any third parties (approval/processing/access)» Barriers to use of national data» National experts contact information Promising practices National experts surveys/ interviews October-December 2013» Data processing approval authority» Data processing expert» Research data centre leader» Remote data access provider» Expert in routine data use for quality monitoring/improvement» Leader of a multi-country study about quality or performance 14

15 Key steps» Country survey in the field June-September 2013» Expert interviews/surveys October-December 2013» Draft report monitoring progress To HCQI for comments Winter 2014 Publication to follow» First draft risk and promising practices report Winter 2014» Consult stakeholder communities about the findings and revise the report Spring/summer 2014» Draft risk and promising practices report to HCQI and WPISP for comments October 2014» International workshop Winter 2015*» HCQI and WPISP final comments Spring 2015*» Publish risks and promising practices report 2015* *Requires inclusion within the programme of work for

16 REPORT ON THE DATA DRIVEN ECONOMY Project contacts: and 16

17 Data driven economy (Big Data)» OECD report on the data driven economy as a source of economic growth» A multi-sector project - health, consumer policy, data protection, public-sector governance and science and innovation» Information Infrastructure Project findings will contribute to a chapter about health data and to an associated report for the Health Committee» Drafts for review by the HCQI and the Health and ICCP Committees in late fall 2013 and spring 2014» OECD report publication planned for October

18 Health data chapter» Describe the growing data environment and its implications for» Scientific breakthroughs and health care innovation» Governance of the quality, safety and efficiency of health care and» Informing and empowering patients» Describe the essential elements to make progress» Legislative and policy environment» Health data governance» Technological infrastructure and» Development of necessary skills» Conclude with future opportunities/recommendations 18

19 Delegates are invited to.» Comment on the role of the advisory panel and the proposed objectives and work plan 19