feedback from the national focal points for surveillance
TRANSCRIPT
Feedback from the NFP for Surveillance meeting, 12 October 2016
Bruno Ciancio, SRS
European Centre for Disease Prevention and Control
Stockholm, 13 October 2016
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Main topics addressed
1. Surveillance system reengineering project (SSR)
2. Status of the LTSS implementation
3. Isolate based reporting
4. Country profiles
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Aim of SSR
• To address current system’s inefficiencies and technicalweaknesses, to reduce the reporting burden and tomaximise the EU/EEA surveillance benefits for the MemberStates
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Phase A: Target Surveillance ArchitectureDefines the business vision, processes, concepts,
information, application, infrastructure
High-level project phases
Phase B: Reengineering roadmapWhat components will be reused, build or acquired
Phase C: Roadmap implementationPlanning and roadmap execution
2015/2016
2016
2017 onwards
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Some numbers
• 5 business functions identified
• 70 processes modelled
• 150 business objects used as in- and outputs.
• 120 blocks of IT functionalities
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Recommendations from MS (surveillance, microbiology, threat detection), June 2016
1) Make the surveillance management transparent to data providers
2) Reduce the surveillance burden
3) Integrate surveillance systems
4) Find ways to promote visibility of national data providers with their National authorities (MoH)
5) Keep emphasis on data interpretation
6) Monitor use of data from third parties
7) Strengthen visualisation tools especially for event based surveillance
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Main feedback on SSR NFP Surveillance 12 October
1. Collaborative platform (MyECDC) giving access to all surveillance applications and processes
2. Notification system embedded in MyECDC
3. ECDC giving access to external data sources and interagency databases, including analysis guidelines
4. Facilitate easy upload of frequently reported diseases (machine to machine, laboratory based, cases instead of files)
5. Make the data access from third parties transparent (list of requests, requesters, data)
6. Prioritise EPIS, communication platforms, and solutions for frequent uploading of data
7. Keep MS informed on SSR through extranet and newsletter
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Application modelling – IT functions
Next step (starting now)
Find solution alternatives ideas
Model solution alternative ideas
Evaluate and select based on pre-defined criteria
Model IT approach
Gap and re-use
Emerging techno.
Pain pointsWhat do
ECDC and MS need?
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Criteria for choosing between solutions (draft)Criteria Meaning
Consistent Single sign on, same look and feel, consistent terminology (diseases, country codes etc.), similar design themes (ECDC style) through all the access/dissemination channels (mobile, desktop, tablet)
Reliable Information can be trusted due to good data quality assurance processes and resulting products. IT systems supporting surveillance should be error-free
Fit-for-purpose We must choose solutions fit for surveillance purposes.
Transparent Our surveillance processes and data manipulations are visible to appropriate users, so they know what to expect and when
Productive Could be achieved through, for example, pre-filled templates, guided decision making, business intelligence etc.
Automated Our systems reduce manual activities/steps when appropriate
Inter-operable All surveillance tools, components and support systems are integrated (for example, through the use of Terminology Services). Seamless information flow should not be hindered by separate technologies/platforms
Confidential The systems should facilitate access to data in a controlled manner, protecting confidential information and making non-confidential information accessible to apprpriate audiences.
Compliant Examples of regulations that our systems should be compliant with: ECDC founding regulation, current ECDC Director decisions, ECDC IT principles
Flexible/adaptable Our systems are flexible enough to accommodate changes in a timely manner and support innovative analysis.
Following are examples of areas where flexibility is needed: adding a new diease for reporting, producing a new type of report if and when needed, event detection.
Competent Surveillance systems should support state of the art epidemiological methods and outputs.
Cost-Effective The design, acquisition, implementation and operation of the system should be achieved at a cost that the business finds acceptable when judged against the benefits derived.
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When can we expect something concrete?
Isolate-based reporting and molecular typing: how far should we go?
Feedback from Working Group 1
Michaela Diercke
Meeting of the National Focal Points for SurveillanceStockholm, 12 October 2016
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Diseases
For which diseases should a more frequent reporting be pursued for the purpose of detecting emerging events?
• Molecular typing data would be useful for every disease, but a matter of priority. Survey approaches may be appropriate in many cases rather than continuous surveillance.
• Discussion both on diseases for which typing data collection in some form and/or more frequent reporting of case-based data would be beneficial
• Any disease which has an outbreak detection objective (meningococci, hepatitis A etc) should be considered for isolate-based reporting if the case-based reporting is not frequent enough to meet the objective
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What are the main constrains for timely reporting?
• Lack of IT resources (this is also true for case-based reporting)
• Many sources of reporting delay:
• Clinicians reporting data late to lab/public health institute
• Delay in isolate reaching laboratory
• Delay in isolates being characterised (batch testing)
• Delay in reporting of data to ECDC
• Data being kept back for publications (especially when work co-funded by research grants)
Timeliness (I)
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How can ECDC facilitate faster reporting?
• More machine-to-machine reporting
• Information about confidentiality of TESSy to reassure users that sharing data there does not infringe on publication elsewhere
What is “acceptable” reporting delay?
• Disease-specific, and depends on objective for surveillance
Timeliness (II)
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• Comprehensive reporting through isolate-based reporting is not possible for many countries:
• Some countries lack capacity to type isolates according to the methods supported in the TESSy data collection
• Some countries have many laboratories performing characterisation, and only a subset reaches the national public health laboratory
• Emergence of private laboratories and culture-independent testing has reduced the number of isolates available to many national public health laboratories
• Linking of lab and epi data:
• Not systematically done in many MS; for low incidence diseases it can be done manually based on dates, age and gender
• Proposal to ensure that for all isolate-based reporting, it should be technically possible to link multiple isolates to the same case
Completeness
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• Unless epi and lab data can be systematically linked in a majority of MS, removal of overlapping case and isolate variables is not possible
• Machine-to-machine would be the main way to reduce burden of reporting, especially for more frequent submissions
• A presentation (by Austria?) on practical experiences of machine-to-machine reporting to TESSy would be useful at the next NFP Surveillance meeting
Reporting pathways
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Thank you for your attention
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Reserve slides
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1) Make the surveillance management transparent to data providers
SSR solutions
1. One collaborative surveillance platform
2. User-customisable activity monitoring dashboard
3. New semi-automated validation process (upload-validate-submit)
4. New meta-dataset management system
5. Electronic workflows and document management systems to support reviews and approvals
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2) Reduce the surveillance burden
SSR solutions
1. Data pull/push possible (HAI, isolate-based reporting)
2. Semi-automated upload-validation-submission
3. Simplified permission management (one role for upload/submit)
4. Less mandatory fields in TESSy
5. Meta-dataset stability
6. Machine-supported assessment and decision-making
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3) Integrate surveillance systems
SSR solutions
1. One entry for EPIS/TESSy
2. Seamless data flows between surveillance applications
3. Surveillance data can be explored/analysed while investigating events and the other way around
4. Same look and feel across applications
5. Single sign in
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4) Find ways to promote visibility of national data providers with their National authorities (MoH)
5) Enhance feedback to data providers
SSR solutions
1. Country profiles (across diseases)
2. Country Disease Data Feedback report
3. Access to the collaborative platform
4. Surveillance process monitoring dashboard
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6) Keep emphasis on data interpretation
SSR solutions
1. Repositories of data ready to be analysed
2. Cleaned communicable disease data
3. Easily accessible external data sources
4. Repository of thresholds and public health targets
5. Repository of events and threats
6. Automated routine analyses free up time for advanced analyses
7. Connect EQA results with epidemiological analyses
8. Better surveillance systems descriptors
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7) Monitor use of data from third parties
SSR solutions
1. Electronic workflow to handle requests
2. Requests list available to data providers
3. Tools for tracking publications
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8) Strengthen visualisation tools especially for event based surveillance
• EPIS mobile app
• Threats dashboard
• Determinants dashboard
• Tools for integrated microbiological (genetic distance and phylogenetic tree) and epidemiological (geospatial distribution) data visualisation
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Process example: collect communicable disease data
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Data modelling – data objects