UK Longitudinal Linkage Collaboration

Have your say: linking Viking Genes data for future research

We’re considering joining the UK Longitudinal Linkage Collaboration (UK LLC), led by the Universities of Bristol and Edinburgh, and would like to hear your views. This is particularly relevant to volunteers in Viking Genes studies whose data would be included in the proposed collaboration.

The UK LLC is a collaboration led by the Universities of Bristol and Edinburgh to simplify access to linked data for research in the public good. Linked data includes things like electronic records of hospital admissions and prescriptions. 25 cohort studies like Viking Genes have joined up so far, including in total over 600,000 participants. 

The LLC aims to be a national resource which consolidates the data from all the individual studies and provides secure access to bona fide researchers in a streamlined and safe way. The LLC follows the "Five Safes" framework - safe projects, safe people, safe data, safe settings and safe outputs. 

• Safe projects means that all data use goes through careful independent review to check it is for the public good and only the relevant data for the question is made available. 
• Safe people means that only trained and approved researchers working in legitimate research organisations (such as Universities or the NHS) are able to use the data. Researchers and their institutions will sign legally-binding confidentiality contracts. 
• Safe data means the data are always held in the UK and are de-identified so that it is highly unlikely any one individual could ever be identified. Staff and researchers will not see names, addresses or other identifiable information.
• Safe settings means that the data cannot be copied or removed from the secure research environment in Bristol where it is held. 
• Safe outputs means that checks are in place to ensure the outputs of research - results, tables and graphs - meet confidentiality standards. Before being used in reports, papers or evidence to policy makers, research outputs are checked by trained statisticians to confirm they are anonymous and safe to leave the secure research environment.

The LLC will also carry out data linkages, that means linking together other data that is available for study participants, such as official health, education and occupation records, as well as data related to where they live (for instance on pollution levels). Viking Genes already has linkage to electronic health records but joining the UK LLC means that we will no longer need to go through the onerous process of getting permission to do these linkages - last time I did this it involved a 49-page form with 18 appendices! It also means that the data will be able to be used far into the future, even after I retire.

For every application which seeks to use Viking Genes data, the Viking Genes team in Edinburgh will be able to decide if our data is included.

You can read more about UK LLC here: https://ukllc.ac.uk/

Please let us know by email at viking@ed.ac.uk whether you support Viking Genes joining the UK LLC?

Also do you have any concerns about our working with the UK LLC - e.g. around the purpose of research, data being shared with researchers outside the University of Edinburgh (including internationally) or new data linkages taking place?

Thanks very much for your assistance with this, it is becoming ever-more important to understand the point of view of study participants and so your involvement is very valuable to me.

All the best

Professor Jim Flett Wilson