Governance and data access an interactive approach

Speaker: Dr Catherine Heeney # University of Edinburgh; Speaker: Dr Tom Clemens # University of Edinburgh; Speaker: Dr Lee Williamson # University of Edinburgh; Speaker: Prof Chris Dibbens # University of Edinburgh; Speaker: Dr Susan Carsley # University of Edinburgh

13th Nov 2015

15:00 - 17:00

New Register House, 3 West Register Street, Edinburgh EH1 3YT

Longitudinal Studies Centre Scotland & Science Technology and Innovation Studies, University of Edinburgh

The reuse of data from existing health records is increasingly important in social health research. As potential subjects of health data audience members have a stake in understanding the mechanisms and motivations for accessing and using administrative records on the population for research. This event explores ethics and governance of social health research interactively. Audience members will participate in decisions on accessing data from various sources to answer a specific population health question. We will use the real example of the relationship between low birth weight and pollution and access to data from the Scottish Morbidity Databases and hospital records and linkage with the Scottish Longitudinal Survey (SLS). At each stage the audience will be asked which type of data would be required and which governance structure would fit best. We will use the comparison between audience expectations and current ethics and governance frameworks as a spring board for discussion.

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