NICOLA is one of many UK longitudinal research studies contributing to the Longitudinal Health & Wellbeing National Core Study for COVID-19 Research.
We want to examine how the pandemic has impacted people in Northern Ireland compared to other parts of the UK and Ireland. To enable this, NICOLA has been invited to contribute data to a national research partnership called UK Longitudinal Linkage Collaboration (“UK LLC” for short) which is embedded within the COVID-19 Longitudinal Health & Wellbeing National Core Study. The UK LLC is run by the UK’s top scientists to allow large population studies such as NICOLA to fully contribute at a national research level. This is in an effort to look at a big picture, not just COVID-19 in itself but the impact that lockdown and other restrictions have had on education, families and wider health (for example mental health, cancer care or other ongoing health needs). The UK LLC funding comes via the Medical Research Council. Click on the UK LLC logo below to find out more about their work.
What does this mean for you?
To achieve this, relevant COVID-19 data from NICOLA is transferred into a secure and confidential research database with data from similar UK studies. The University of Bristol runs this on behalf of the UK, supported by the University of Swansea.
It is also necessary to link participants to their health, administrative and environmental records so we can see for example those who have had COVID-19 infection, those who have had hospital treatment, those whose existing conditions have been managed by their GP and those who have been vaccinated during the pandemic.
NICOLA participants who completed and returned a COVID-19 questionnaire will be included in this important database unless they returned an opt-out decision form which was sent to participants in April 2021 along with a letter explaining this important research.
- What does the process involve?
- Who is involved in the process?
The process outlined above will enable the NHS to establish the following anonymised linkages of data to the:
- Northern Ireland Health Service (i.e. in Northern Ireland these are held in the NHS Northern Ireland Business Development Organisation);
- UK statistical agencies (i.e. Northern Ireland Statistics & Research Agency);
- University of Leicester which will receive address data only in order to link this to precise location and then map information about this place (such as air pollution, noise data, services and the amount of greenspace around the property, factors which have been impacted by the pandemic).
- Who controls the NICOLA data?
Nothing has changed. The NICOLA study team at Queens University Belfast control the data at ALL times to ensure that all the study principles are upheld. We determine the records used in the UK LLC, the linkages that can be established, which researchers can use the data and for which purposes. Most importantly we cannot do any of this without your agreement. All NICOLA participants were sent a letter explaining this research including an opt out decision form if they decide not to be part of this research. All NICOLA participants have the right to withdraw at any time without giving a reason. A full list of researchers using the UK LLC data and the purpose for their research, can also be obtained by emailing email@example.com.