SHIP Core Programmes
C1: Provisioning Datasets for Research
Prof Andrew Morris, Dr Marion Bain.
Aims
- To create a research portal for EPRs already held by NHS Scotland, the Scottish Health Information Service for Research (SHIS-R).
- To develop and evaluate innovative technical approaches that allow linkage between large, federated, third party research datasets between themselves and with SHIS-R.
- To develop and evaluate systems that work across institutional boundaries with adequate data manipulation and statistical functionality that provide rapid, secure, access to the type of data that clinical scientists require.
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C2: Governance
Prof Graeme Laurie, Dr Claudia Pagliari, Prof Sarah Cunningham-Burley.
Aim
- To analyse the ethico-legal and cultural challenges associated with the secondary use of electronic patient records in Scotland, the wider UK and internationally, with a view to mapping the elements necessary to contribute to an optimal governance regime.
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C3: Engaging Researchers
Prof Paul Boyle, Prof Jeremy Wyatt.
Aims
- To host a biennial conference Exploiting Existing Data for Health Research
- To develop and deliver training programmes and workshops for EPR research
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C4: Public Engagement
Dr Claudia Pagliari, Prof Sarah Cunningham-Burley, Prof Jeremy Wyatt,
Prof Graeme Laurie, Prof Ian Ford.
Aims
To synthesise existing evidence on citizens' attitudes towards and willingness to share personal data for research.- To generate new evidence on the acceptability of different levels of data sharing under varying conditions.
- To engage the wider public with the aims, processes and outcomes of the SHIP through specific consultation exercises and workshops.
- To link the public engagement activities into the development of governance frameworks (C2).
- To examine novel methods of making health data available to the public.
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