hisi conference 2016 - ros moran hrb - november 16th 2016
TRANSCRIPT
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DASSL Model: Proposal for making safe use of health and related data
Rosalyn Moran
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Access, Sharing, Linking of Data – the BenefitsPROVIDE BETTER AND SAFE ACCESS
• Make better use of existing data for health and economic gain
• Allow for secondary use of data
FACILIATE SHARING and LINKAGE
- Reduces duplication
- Pool data – statistical power
- Longitudinal data
- Linking health with other data sets
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Presentation outline
1. Context & methods
2. The data landscape in Ireland
3. The DASSL model
4. Concluding remarks
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1. Context and Methods
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Context
• Researchers were reporting difficulties trying to access and / or link data
• HRB decision to investigate the issues involvedMethods used- International literature & experience- Site Visits- Interviews…data related needs, practices, attitudes
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Beyond health data
Challenges and opportunities experienced by health researchers were shared with a wide range of data users in the wider Irish data ecosystem
– a solution for the health community could serve the broader data ecosystem
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2. The Data Landscape
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The data landscape – Ireland
• Major data assets
• Wide range of data collected in Ireland by different people with different mandates–Census / Administrative data
–Routinely collected health services data
–Disease Registers
–Survey data/cohort studies (GUI, SILC)
HIQA data catalogue with 109 datasets
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Challenges in using our data resources
• Uncertainty around legal frameworks & how to interpret legislation
• Concerns re data protection• Culture of caution
• Lack of skills to prepare data properly for sharing• Identifiers/link - It can be difficult to get consent
to access & share personal data
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Strike a balance: privacy & public good
• ‘the duty to share information can be as important as the duty to protect patient confidentiality’.
(7th Principle to Caldicott guiding principles)
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3. The DASSL ModelData
Access
Storage
Sharing
Linkage
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The DASSL Model(see page 5 of report)
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The DASSL model enables
• safe projects (valid research purpose)
• safe people (trusted researchers)
• safe data (protection of data)
• safe setting (security controls)
• safe outputs (disclosure control of outputs)
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DASSL model: Potential benefits in Ireland
• Better and safer use of existing data • Better science • Better health and wellbeing
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Some International Initiatives
15
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4. Concluding remarks
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ProgressReport was launched at a seminar with stakeholders - 24 May 2016, Dublin• Strong consensus that model addressed urgent national need• Department of Health and Children – Muiris O Connor and team• Some key players had follow-up visit to SAIL in Wales • Possibilities in the sharing of SAIL, Wales SW and HW – reduce costs considerably• A Proof of Concept is being discussed • Wish to hear from relevant players from the Irish data ecosystem who wish to have a role in implementation of the model
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If we want to have a safe and trusted modern infrastructure that will enable
researchers to unlock the significant value of currently underexploited data for the
public good, then a DASSL or similar model needs to be implemented in Ireland.(source: HRB Report)
‘