Update Spring 2021 – EDGI joins the UK Longitudinal Linkage Collaboration
What is the UK Longitudinal Linkage Collaboration?
The EDGI study (part of the NIHR Bioresource) is one of many UK research studies contributing to the Longitudinal Linkage Collaboration (LLC). Longitudinal studies are studies that follow up with their participants over time. The LLC is a collaborative research effort, part of the Longitudinal Health & Wellbeing National Core Study for COVID-19 research, which is run and funded by the UK Government. The LLC has been designed by the UK’s top scientists to allow studies such as the EDGI study and NIHR BioResource, which collect important data relating to health and wellbeing, to fully contribute to the national research programme and policy development.
What does this mean for EDGI?
To do this, EDGI, along with many other relevant studies will combine their COVID-19 relevant data into a single secure research environment. This will provide a large source of data on diverse populations from all over the UK, including relevant demographic and mental and physical health data to build a comprehensive picture of the risks and consequences associated with COVID-19.
What will the LLC investigate?
This research programme not only looks at the impact of COVID-19, but also the impact that lockdown and other restrictions have had on wider health (such as mental health, cancer care and other ongoing health needs), education, and families.
What data will EDGI deposit into the LLC?
To achieve this, EDGI and the NIHR BioResource will deposit the data you provided about your health and wellbeing to us, and especially our COVID-19 studies such as COPING, into the LLC’s secure research environment, in a de-identified form. “De-identified” means that your data will be stored with a random ID, and will not include any of your personal identifying information (e.g., first name, last name, etc) or contact details. This secure research environment is hosted by the University of Bristol and the University of Swansea. This transaction is governed by a strict legal contract that ensures the safety of your data.
EDGI will also seek your relevant medical records from the NHS, and the NHS will securely deposit this medical record data into the LLC. When the NHS does this, they remove your identifiable information such as your name and address. In order for the NHS to accurately link to your medical records, we need to send your name, NHS ID, and relevant addresses to the NHS.
Rest assured, that your medical data and research data are always sent and transferred separately, with masked IDs in order to protect your identity.
What are my rights?
When you signed up to the EDGI study, you consented to link to your medical records and share your de-identified research data. If you do not want us to share your data with the LLC, you have the right to opt out. If this is the case or you wish to discuss this further, please get in touch with us by email at email@example.com.
Data Access and Control within the LLC
Your data is stored on secure servers controlled by the University of Bristol, with the servers located at and run by the University of Swansea. The UK LLC will make available a full list of researchers using the UK LLC data and the purpose for this, which can be obtained by emailing firstname.lastname@example.org. The EDGI study will also publish the list on our website, along with all our other approved studies.
The UK Data Protection Act 2018 provides individuals with rights over how their data are used. The UK LLC supports these rights, as does the EDGI UK. King’s College London and The NIHR BioResource (through Cambridge University Hospitals NHS Foundation Trust) remain the Data Controllers for your data. At all times, we will determine whose records should be used in the UK LLC, which linkages can be established and which research teams can use your data and for which purposes. In this way, we make sure that all the principles of EDGI UK and the NIHR BioResource that you consented to are upheld.
This new collaboration aligns with our usual privacy and confidentiality terms below.
How is the information I give you kept confidential?
Keeping your information secure is our highest priority. There are a number of regulations and policies that the Eating Disorders Genetics Initiative complies with to ensure data is protected and that biological samples are stored correctly.
Storage and work on personal data or biological data will always be in accordance with the current ethical guidelines, and the conditions of the consent you have provided. In the event that ethical guidelines are modified, the project will be further evaluated for ethical approval.
Personal data such as contact details and linked clinical and phenotypic data being stored at the NIHR BioResource and will be kept at AIMES, which is GDPR compliant and an ISO27001-certified data centre, specialising in health care data and medical research, based in Liverpool This data will also be shared with King’s College London and will be on secure servers in accordance with the Data Protection Act (DPA) 2018. Data will not be passed on to any third parties including your doctor, your insurance company or your employer. All data will be used in an anonymised linked format with personal information being accessible only to the recruitment team and clinical staff who have DBS (Disclosure and Barring Service) clearance and are bound to confidentiality by their University/NHS contract.
Biological samples and genetic data
Biological samples from England will be stored through the NIHR BioResource (REC: 17/EE/0025) in the NIHR National Biosample Centre in Milton Keynes. This is a central NIHR funded facility, which holds an HTA license (License number: 12624).
Staff at the storage centres will ensure that genetic samples are processed in accordance with strict health and safety guidelines and under the requirements of the Human Tissue Act (HTA) 2004. The link between the participant ID and de-identified data will be kept in a secure database accessible only to the lead investigators, the NIHR BioResource team members and senior researchers.
Useful links for more information about use of personal and biological data
The General Data Protection Regulation is an EU Regulation which was put in place to ensure the protection of all EU citizens’ data privacy. It also gives people the rights to access any information held about them.
If you provide the EDGI team with a saliva sample, your biological sample is protected by the Human Tissue Act 2004. The Act regulates the removal, storage and use of human tissue and ensures all samples are collected appropriately.