International Data Linkage Conference 2012

Laurie, G. (Speaker)

Activity: Participating in or organising an event typesParticipation in conference

Description

With Nayha Sethi: 'Scottish Health Informatics Programme: What Can We Learn from the Scottish Approach to Governance?' The potential benefits which data linkage brings to a variety of settings is increasingly evident. It has great potential for improving population-wide health and well-being. Scotland hosts some of the richest and best organised datasets in the world, but a burdensome regulatory and governance landscape has hitherto stood in the way of realising full potential, a challenge resonating across the UK and beyond. This paper offers insights from Scotland about how we are addressing these issues and overcoming the challenges. The Scottish Health Informatics Programme (SHIP) funded by the Wellcome Trust, is a Scotland-wide initiative dedicated to facilitating and optimising the secondary uses of health data for research on a national and international scale. The paper offers an overview of how we at SHIP have been tackling these governance challenges in Scotland over the last two years. In particular it highlights the importance of robust and proportionate approaches to governance, including an outline of how we developed and are implementing such approaches. Our approach includes: Guiding Principles; categorising data access applications according to the perceived risks associated with particular linkages thus emphasising proportionality, the development of a Good Governance Framework which incorporates these and other approaches and which establishes an effective, efficient and gold standard for data linkage and sharing for health-related research. This is aimed at simplifying and speeding up the approval process for researchers without compromising security, introducing the role of a Research Coordinator and developing a researcher training programme including a data toolkit and learning module.
PeriodMay 2012
Event typeConference
LocationPerth, Australia