The DASSL model proposes making better use of existing health and related data in Ireland by allowing secondary use and data sharing and linkage in a safe manner. It would facilitate pooling data from different sources to increase statistical power and allow longitudinal analysis. The model enables safe data access, storage, sharing and linkage by ensuring valid research purposes, trusted researchers, protected data, secure settings, and controlled disclosure of outputs. An international review found the DASSL model could address challenges around unclear legal frameworks, data protection concerns, and lack of skills and identifiers that currently limit data use in Ireland. It aims to strike a balance between privacy and enabling public good research.

1. DASSL Model: Proposal for making safe
use of health and related data
Rosalyn Moran

2. Access, Sharing, Linking of Data – the
Benefits
PROVIDE 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

3. Presentation outline
1. Context & methods
2. The data landscape in Ireland
3. The DASSL model
4. Concluding remarks
• ___

4. 1. Context and Methods

5. Context
• Researchers were reporting difficulties trying to
access and / or link data
• HRB decision to investigate the issues involved
Methods used
- International literature & experience
- Site Visits
- Interviews…data related needs, practices, attitudes

6. 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

7. 2. The Data Landscape

8. 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

9. 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

10. 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)

11. 3. The DASSL Model
Data
Access
Storage
Sharing
Linkage

12. The DASSL
Model
(see page 5 of report)

13. 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)

14. DASSL model: Potential benefits in
Ireland
• Better and safer use of existing
data
• Better science
• Better health and wellbeing

15. Some International Initiatives
15

16. 4. Concluding remarks

17. Progress
Report 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

18. 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)
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19. Contact me at rmoran@hrb.ie
www.hrb.ie