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FOLLOW UP ON STRENGTHENING
HEALTH INFORMATION
INFRASTRUCTURE
HCQI Expert Group, 16 November 2012
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» The 2010 Health Ministerial Communiqué noted that health care quality improvement requires more effective use of data that has been already collected
» Strong information infrastructure requires » Data about real people in “real world settings”» Individual-level data and often the linkage of data
across two or more different databases» Protection of data privacy in the collection and
use of personal health data
Agenda to improve health information infrastructure
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1. Electronic health record system development and its potential use to monitor health care quality and system performance
2. Health and health care monitoring and research using personal health data and the protection of information privacy
3. Joint consultation with the OECD Working Party on Information Security and Privacy about privacy protection challenges in the use of personal health data
OECD health information infrastructure projects 2011-12
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1. ELECTRONIC HEALTH RECORD SYSTEM DEVELOPMENT AND ITS
POTENTIAL USE TO MONITOR HEALTH CARE QUALITY
KEY FINDINGS
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Desired qualities of EHR system records include:
» Accuracy, completeness, comprehensiveness, reliability, relevance, timeliness and accessibility
If these desired qualities are reached…
» EHR systems could support monitoring and conducting research on the health of populations and the quality, safety and efficiency of health care
» Evaluation of the suitability of EHR systems to support statistical uses can not wait – as decisions taken today may either facilitate or obstruct statistical uses
Desired qualities of an EHR system
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» National plans to implement EHRs (22)» Includes data use for monitoring/research (18)
» National governing bodies responsible for national clinical terminology and interoperability standards (18)
» Implementation started (20)» Minimum data sets defined (18)» Use clinical terminology standards for key elements
in all records (ex. diagnosis (13))» Databases for health care monitoring/research
already developed from EHR records (12)
25 countries participated in an HCQI survey that found:
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Over the next 5 years:
How likely is it your country will use any data from EHRs for national health care quality monitoring?
Views about the next 5 years
FinlandIndonesia VerySingapore LikelySwedenUnited KindomBelgiumCanadaEstoniaFrance LikelyIcelandJapanPolandSlovakiaDenmarkIsrael UnsureSloveniaSpainUnited StatesMexico UnlikelyAustriaGermany VeryNetherlands UnlikelySwitzerland
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» Legislative barriers» Data privacy/security
concerns» Shortages of
resources/skills» Lack of standards» Interoperability problems » Lack of unique identifiers» Data sharing» Reluctance among health
professionals» Data quality
Barriers and facilitators
» Governance of EHR implementation and data use
» National standards - clinical content and interoperability
» Legal/regulatory requirements
» Certification of vendors» Incentives/penalties» Evaluation of data usability» Auditing of clinical content
Barriers Facilitators
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3. SECONDARY USE OF PERSONAL HEALTH DATA TO MONITOR HEALTH, HEALTH CARE QUALITY AND HEALTH
SYSTEM PERFORMANCE
KEY FINDINGS
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» 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
» Found considerable cross-country variation – linked to differences in risk-management in balance of data access and data privacy
Fact finding
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» All reported hospital in-patient data; mortality data; population census or registry data; and survey data
» All are collecting identifiable personal health data at a national level
» All countries report using national health data to regularly monitor some aspects of health care quality
» All countries report having legislation that speaks to the protection of personal information.
» Many examples of the linkage of data to support health care quality and health system performance
National information infrastructure appears strong
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Country variationNational Data
linkage projects on a regular
basis…
Most national data with a unique patient identifying number
(UPI)
Most national data with other
patient identifiers
Some national data with a
unique patient identifying
number (UPI)
Few national databases with patient identifiers
with 7+ national databases
Denmark, Finland, Israel, Republic of Korea, Sweden, United Kingdom
United States
with 5-6 national databases
France,Singapore
Australia Switzerland
with 3-4 national databases
Belgium, Canada, Malta, Norway
with 2 national databases
Cyprus, Portugal
None Japan Poland, Germany
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About half of countries monitor health care quality regularly via linkages
Patient experiences survey data
Formal long-term care data
Population health survey data
Mental hospital in-patient data
Primary care data
Population census or registry data
Prescription medicines data
Mortality data
Cancer registry data
Hospital in-patient data
0 2 4 6 8 10 12 14
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» Whether or not… » An exemption to patient consent requirements may be
granted?» Authorities holding data needed for a project (data
custodians) will share data with other government authorities?
» It is clear with whom to request approval and what is the criteria to obtain approval?
» There are mechanisms for privacy respectful access to data?
Sources of variation
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» Failing to maintain current capacity to generate evidence due to the costs of project vetting, linkages, and data access services
» Moving backward in the generation of evidence due to:» Increasingly strict interpretations of existing
legislations» New legislations speaking to data privacy
protection legislation due to EU reforms, ICTs, new projects
Concerns about the future
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4. JOINT CONSULTATION OF THE OECD HEALTH CARE QUALITY
INDICATORS EXPERT GROUP AND THE OECD WORKING PARTY ON INFORMATION SECURITY AND
PRIVACY
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» Members of the OECD Health Care Quality Indicators Expert Group met with members of the OECD Working Party on Information Security and Privacy 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
Joint dialogue with experts in data privacy
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The group recognised that: » The implementation of OECD privacy guidelines
in the field of health care has been heterogeneous across countries
» Excess variability reduces access to complete data and undermines internationally comparable indicators
» Privacy and health experts have trouble communicating with each other because they lack a common vocabulary
Conclusions
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Countries would benefit from an international effort to:» Categorize different forms of data and data uses
according to their risks to data privacy » Provide a portfolio of best practices» Illustrate how best practices may be translated
into local implementation» An on-going dialogue will be needed to provide
direction regarding new forms of health data, e.g. ICTs
Recommendations
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PROPOSED WORK PLAN FOR THE HCQI INFORMATION
INFRASTRUCTURE PROJECT
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On-going monitoring of the development of national information infrastructure
» Bi-annual data collection – avoiding overlap
» Report in the OECD Health at a Glance publication
Health data privacy project » An international health data privacy lexicon providing
common terms of reference for privacy and health experts
» A taxonomy of risk in the usage of health data
» Promising practices enabling secure access to each category of data.
Proposed work plan for 2013-15
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» Personal health data and the use of these data for health and health care quality monitoring and research
» Track progress since 2011
Monitoring in 2013
Key steps Time frame
Develop core questionnaire content (harmonised)
Jan.- April 2013
Report back to HCQI expert meeting May 2013
Conduct the survey June-Sept. 2013
Report results to HCQI expert meeting
Nov. 2013
Draft, review and finalise publication material
Dec.-May 2014
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» Electronic health record systems and the use of these data for health care quality monitoring
» Track progress since 2012
N.B. subject to approval in the 2015-16 PWB
Monitoring in 2015
Key steps Time frame
Develop core questionnaire content
Jan.-Apr. 2015
Report back to HCQI expert meeting
Spring 2015
Conduct the survey and case studies
June-Sept. 2015
Report results to HCQI expert meeting
Fall 2015
Draft, review and finalise publication material
Dec.-May 2016
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» Privacy regulators, IT professionals, statisticians, health policy makers and researchers each have their own vocabulary for discussing data privacy
» Some concepts are poorly defined
» We need to communicate clearly to all stakeholders in decisions about the protection of data privacy
» This requires that we develop clear and agreed-upon definitions
» Work on a lexicon should proceed simultaneously with work on a taxonomy
Health data privacy lexicon
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Objective: Categorise types of data, data uses and data users in terms of risks
Level: International (root level)
Presentation: Excel workbook or database
Benefits:
» Support harmonisation of practices
» Support multiple users and uses
» Approval bodies, data custodians, researchers, privacy regulators
» Country-specific level can be developed (national policies and practices)
Health data privacy taxonomy of risk
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Taxonomy of risk dimensions
• Type, coverage, collection method, sensitive variables• Data de-identification steps and methods used
Data dimensions
• Access to aggregates, to partially identifable microdata, to identifiable microdata
• Government, academic research, industry research
Data access and users dimensions
• Participant consent method• Data use, including linkage• Public benefit of data use• Access controls• Data security controls
Policy dimensions
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» Promote consideration of both risks to individual privacy and to public health/good governance when decisions are taken
Health data privacy taxonomy of risk
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» Data with high risk to individual data privacy will require strong controls to mitigate risk
» This project complements the taxonomy by describing controls that hold the highest promise for reducing risks to privacy including:
» Data de-identification steps and methods
» Participant consent methods
» Access and data security controls
Promising practices in enabling use
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Surveys and case study interviews will help us to learn more
» About the decision rules/taxonomies that are used when projects are approved
» About the data privacy protection practices that are currently used
Experts interviewed for the 2011/12 HCQI information infrastructure studies would be key resources in addition to new experts to be identified by countries
Evidence gathering
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» Many stakeholders are involved in decision-making about health data and its uses
» We propose identifying a small and focussed advisory panel to guide the project that includes multiple stakeholders
» We propose sharing interim results with stakeholders and obtaining feedback
Stakeholders:
» Privacy regulators
» Health data custodians
» Research review boards
» Health policy makers
» Researchers
» IT professionals
» Patient groups
Stakeholder engagement
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N.B. subject to approval in the 2015-16 PWB
Milestones Date
Advisory panel formed Jan/13
Refined project plan shared with HCQI and WPISP
Mar/13
Evidence gathering inc. survey of countries (harmonised)
Jun-Sept/13
Draft lexicon and taxonomy to HCQI and WPISP
Oct/13
Consultation on the draft with stakeholders through interviews
Dec-Mar/14
Revised lexicon and taxonomy to HCQI and WPISP
Apr/14
Evidence gathering inc. interviews with experts to describe promising practices
Jun-Sept/14
Draft promising practices to HCQI and WPISP Oct/14
International multi-stakeholder workshop Feb/15*
Final consolidated report to HCQI and WPISP Apr/15*
Final report published Jun/15*
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» Discuss the publication of the consolidated report (DELSA/HEA/HCQ(2012)11)
» Discuss the proposal for future work to strengthen information infrastructure for health care quality» On-going monitoring
» Personal health data (data linkages) in 2013» Electronic health records in 2015
» Health data privacy project in 2013-15» Lexicon» Taxonomy (risk categorisation)» Recommended practices
Members are invited to….
