NILS-RSU: Continuation 2012-2017

The Northern Ireland Longitudinal Study (NILS) was established in 2006 and - because of its high sampling fraction, its ability to link with strategic non-standard health data, and its companion Mortality Study - is a resource unique in the UK. Its initial development was funded by the Northern Ireland Statistics and Research Agency (NISRA) and the Health and Social Care Research and Development Division of the Public Health Agency (HSC R&D Division). It is currently used to examine issues such as migration, fertility and health. However, its power will increase with the imminent 2001-2011 Census link which will allow analysis of socio-economic and demographic transitions when the data is released in 2013. The NILS Research Support Unit (RSU) has been funded by the ESRC since 2009 with one staff member funded by the Office of the First and Deputy First Minister (OFMDFM), specifically to develop usage more directly inclusive of policy concerns. The core RSU remit is to maintain a 'safe setting', to support users from project design through application and approval to data extraction, analysis and final output, and to promote the research and policy use of the NILS. The development of the NILS is overseen by a steering group that includes funders, data suppliers and users. Project approval is overseen by a Research Approvals Group (RAG) which includes data suppliers and funders.

This RSU funding proposal (2012-2017) further develops this core remit. For the foreseeable future the usual user access methods (which includes supported 'remote' access) will utilise the safe setting so core support provision (noted above) will remain key functions managed from this office, as will the provision of working papers, metadata and other guidance. Existing consultation with users to agree service standards and streamlined application procedure will continue, and the aim of boosting service efficiency through online booking will be pursued. It is anticipated that user demand will grow when the linked data become available and planning is underway to get better facilities, equipment and more support officers to meet this. Promotion of the NILS via the 2001-2011 link through a research plan involving the policy community is significant in the bid in the medium term until 2015, and it is planned that the strong policy emphasis of the NILS will be taken forward and expanded.

The proposal acknowledges fully the need to move beyond core business both to develop the NILS and to respond to a fast-changing external environment. It does this in several ways, including longer term plans taking the Unit to 2017. Some of these are aspirational and some are already in train. It seeks to contribute to the proposed UK LS Hub, and together with other LS support units (LS SUs), and other ESRC investments, to create economies of scale in training, promotion, advocacy and impact. The harmonisation of access, procedures, publicity and websites is part of this agenda as is the pooling of expertise between the LS SUs to deal with user queries. It also contributes to data sharing agendas by proposing a synthetic NILS database which can be shared and accessed remotely to improve the user experience and by exploring methodologies such as 'Datashield' technology for cross-LS analysis. These developments will benefit users, as will an exploration aimed at how remote user access to the NILS, avoiding the need to visit the safe setting, can be made safe and acceptable. The proposal also aims to contribute to wider agendas such as 'Beyond 2011' through research using the NILS (for example assessing the accuracy of address information); through working with users and data suppliers to encourage further exemplar data linkage; and by assessing how modelling might 'fill the gaps' in the NILS. The implications of a non-census future are considered along with the aspiration that the NILS-RSU could become the access point for linked official data by 2015.

Impact on policy and outreach to research audiences have been part of the NILS-RSU remit since its inception. As part of the project design process users must include comments on both potential dissemination groups and implications for policy. The NILS Research Approvals Group (RAG) approval of projects takes account of these aspects. This is because the NILS receives funding from the NI Executive (and they also support an RSU support officer) and this ensures an emphasis on policy and, more generally, the NILS relationship with government. Where possible, projects are planned to impact with policymakers and the public. Examples include research on: suicide in NI; religion and health outcomes (both O'Reilly & Rosato); breast screening (Kinnear et al); fertility (McGregor & McKee); dental activity (Telford); antibiotic prescribing patterns (Johnston & Rosato); accuracy of address information from the healthcare system (Barr & Shuttleworth); and migration and residential segregation (Shuttleworth, Barr & Gould). The RSU produces Research Briefs (summarising published NILS research) and this helps maintain the relationship with government. The forthcoming challenge is to deepen this impact by increasing the range and quality of NILS projects and reaching out to new audiences.

The proposal plans to do this in four main ways.
Firstly, a programme of research developed around the 2001-2011 Census Link. This is loosely organised around the NI '2011 Programme for Government' and includes current (or prospective) research audiences from government, the NI Assembly, other public bodies and the voluntary sector. It involves building relationships with the academic research community and other research bodies. As part of this, it is planned (with support from funders) to raise the profile by using beta testing projects for the NILS 2001-2011 Census link to engage with experienced and early career researchers and produce a landmark edited book - 'NI in Transition 2001-2011'. This will both generate impact and broaden the user base.

Secondly, in cooperation with other LS SUs, to improve the NILS profile both internationally and in the UK. This will be done by creating a stronger web presence and joint promotion of the value of the databases. This should also facilitate an expansion of collaborative research between NI and non-NI based researchers.

Thirdly, the RSU will work to increase NILS impact by making the project specification process more easily managed, to enhance facilities for 'remote' access to NILS data, and to extend data linkages to the NILS. To this end, we see the creation of synthetic NILS datasets to assist researchers to develop analyses, and the exploration of data sharing via secure technologies, as longer-term mechanisms for increasing impact. Likewise, increased coverage and data linkage is part of the long-term strategic vision. A particular feature of the NILS is the linkage of non-standard administrative datasets, allowing Distinct Linkage Projects (DLPs) to be undertaken. Examples of these (some noted above) include breast screening data, dental activity data, electronically captured prescription data, and GP Practice level data. These mean that the RSU is developing expertise in the linkage of administrative data, something likely to increase in strategic importance after the 2001-2011 link. This expertise can be pooled with other the UK LS and also with all UK statistical agencies as well as the UKDS.

Finally, the NILS-RSU is committed to partnership with users and other organisations in NI, and sees this as a key way to increase the impact of the NILS and its research. An example of this is the contribution made to the planning and organisation of a one-day conference to be held in May 2012 on 'Beyond the 2011 Census' which draws in international speakers as well as the UK statistical agency. Continuing such activity is very much part of RSU forward planning.