Innogen

Innogen · Research · Current projects
Scottish Health Informatics Platform

Graeme Laurie

Funding: Wellcome Trust

Started: January 1 2008

The Scottish Health Informatics Programme (SHIP) was a Scotland-wide research initiative for the collation, management, dissemination, and analysis of Electronic Patient Records (EPRs), which brought together the Universities of Dundee, Edinburgh, Glasgow, and St Andrews with the Information Services Division of NHS Scotland. The programme’s aims were to: provide access to a national research facility, firmly embedded within and supported by NHS Scotland, to provide the basis for numerous studies using EPRs; create a research portal for EPRs already held by NHS Scotland to provide rapid and secure access to the data scientists require; and develop and evaluate systems that work across institutional boundaries to allow linkage between large, federated, and third party research datasets and the NHS research portal.

The programme of work provided a wide range of activities, including: engaging with researchers on a programme of training seminars and workshops; engaging with the public to define a transparent and publicly acceptable approach to the governance of EPR research; producing novel research using EPRs and major longitudinal cohort databases, specifically in the areas of clinical trials, pharmacovigilance, diabetes epidemiology, and research resulting from the linkage of EPRs to socioeconomic and environmental data; and exploring the feasibility of taking major genetic studies in Scotland back through time by linking historically vital events for the more than 20,000 study members and their families.

More specifically, linked to the contribution of Innogen-associated staff, this programme helped to develop a transformed and streamlined regulatory terrain in Scotland through the design, testing, and implementation of a good governance framework, and there has been wide adoption and endorsement of this approach by NHS stakeholders, researchers, data custodians, and the public, as well as by Scottish Government in its wider data linkage agenda. Novel features of the good governance framework developed by Innogen staff include: 1.) a Principles and Best Practices Framework for data linkage; 2.) a model of delivering proportionate governance, now operating within sectors of NHS Scotland for access to data for research; 3.) guidance on roles of data controllers; and 4.) online good governance training and accreditation for researchers.