NILS data is confidential and all access to it is regarded as sensitive. Data can only be accessed from within a ´safe setting´ provided by NISRA. This section outlines the process by which data can be accessed for research. While this is mandatory for all projects, it is possible that some pilot work to test project feasibility can be carried out -  this should be discussed with the Research Support Unit (RSU). Although the process outlined below can seem quite complicated both NISRA and the RSU are committed to ensuring it is completed with minimum delay.

Step 1: Formulate your research question

Explore the NILS-RSU website, particularly the data dictionary to see whether the research question of interest can be explored using NILS data. If not sure please contact the RSU where we will be happy to discuss it further.

Because of legislative restrictions all research must relate to the health of the population. While this appears to restrict the research, ‘health’ is understood as in its widest sense (according to the WHO definition - health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity).

Step 2: Contact the NILS Research Support Unit

If still of interest please contact the RSU by emailing nils-rsu@qub.ac.uk (or phoning 028 9082 8210) where unit staff will help to further develop your ideas. Projects will be allocated an identifier at this point.

Step 3: Attend a training session

While not obligatory all potential users are encouraged to attend either a longitudinal study methods training session or a NILS information session prior to working with the NILS. For information on forthcoming events (both NILS training sessions and more general training in longitudinal methods) please see the website, or check with the RSU.

Step 4: Complete an application form

When ready download and complete a NILS Application Form. You will provide details about the researchers involved In the project, and about the context and content of the project itself, including a list of variables required. Any requirement to attach external data to the NILS must be detailed in the NILS Application Form for Distinct Linkage Projects. The completed form should be emailed to the RSU.

Step 5: NILS Research Approvals Process

Once the final versions of the application and associated undertaking forms have been received by the RSU, the project is submitted to the NILS Research Approvals Group (RAG). This group assesses whether projects should be approved and it may provide some advice on how projects could be improved or stipulate changes to be made. The RAG includes representatives from:

Step 6:Complete a NILS  Licence Agreement

The NILS licence agreement must be signed by all project researchers. This form, dealing with disclosure and related confidentiality issues, is issued by the NILS team on completion of the RAG process. It must be returned to the RSU and no project can commence without it. A sample NILS Licence Agreement form can be downloaded by selecting the link.

Step 7: Dataset creation

When the project has been approved, the RSU will generate a project specific sub-set of the NILS data. Some further discussion between the project researchers and the RSU may be necessary before the dataset is finalised. Agreed external data can also be linked at this point. Once the dataset has been generated the researchers will be informed. The detailed specification of the data can be assisted through the use of the Data Dictionary .

Step 8: Analysis

All primary data analysis will be carried out within the NILS ‘safe-setting’ in McAuley House, Belfast, where the NILS database is maintained. Researchers within the setting will be supervised at all times by RSU members, who will also be available for help and advise. Arrangements can be made with the RSU to run analyses remotely: in the case the researchers provide a script which is run a batch job by the RSU. Outputs from these analyses will normally be released from the safe setting (via email) once cleared by the RSU. The main data analysis software packages are normally available (SPSS, STATA, LIMDEP, MLWin, and the main Microsoft packages).

Step 9: Publishing / Presenting results

When disseminating NILS results beyond the project team, final outputs clearance must be obtained, in the first instance, from the RSU.  Researchers must make reference to the Final Outputs Checklist and, subsequently, a Final Output Clearance Form must be completed and sent to the RSU.   

Typical final outputs will be working papers, reports or journal articles intended for publication, presentations or abstracts. Current guidelines allow a maximum of 20 working days for clearance of all final outputs, with the exception of conference/journal abstracts, for which 5 working days are required. 

This process reduces the risk of disclosure, ensures that the study and data are properly described and that the data have been used appropriately. Key criteria considered in this clearance are that:

• displayed results and the accompanying discussion do not raise confidentiality or disclosure issues;
• the NILS/NIMS is described correctly, drawing upon standard descriptions provided by NISRA;
• ´Source: Northern Ireland Longitudinal Study´ is included in tables and figures; and
• where appropriate acknowledge the support of the NILS team by including the following disclaimer: “The help provided by the staff of the Northern Ireland Longitudinal Study/Northern Ireland Mortality Study (NILS/NIMS) [delete as appropriate] and the NILS Research Support Unit is acknowledged. The NILS/NIMS [delete as appropriate] is funded by the Health and Social Care Research and Development Division of the Public Health Agency (HSC R&D Division) and NISRA. The NILS-RSU is funded by the ESRC and the Northern Ireland Government. The authors alone are responsible for the interpretation of the data.”.

Please refer to the Final Outputs Checklist for more information.

When final outputs have been cleared for release they may be freely disseminated provided tables or figures are unchanged and there is no change in the discussion of NILS processes. Changes to these in the text will trigger a new final clearance procedure.

Step 10: Notify the NILS support team of publications

Please notify the RSU when a publication, which draws on the NILS, is published. A library of all published research that uses the NILS is maintained and it is vital for us to keep this up-to-date.