Existing partner LPS transitioning from COVID-19 research to general research for public good#

Update on LPS partnership with UK Longitudinal Linkage Collaboration:

[Insert LPS name] is part of the UK Longitudinal Linkage Collaboration (UKLLC) and we are letting you know what is changing with them, why, and how it may affect you.

In [Insert year LPS joined UKLLC], [Insert LPS name] came together with similar studies to form UKLLC, to create a research resource to help understand the impacts of the COVID-19 pandemic and develop new treatments.

UKLLC is now preparing to make data available, within its Trusted Research Environment, for any public good research, in addition to COVID-19 research. This will help researchers answer more research questions on important issues that affect people’s health and wellbeing.

For example, they can examine how health and mental health conditions affect care provision among different socio-demographic groups or identify factors that can be modified to reduce health risks.

Some studies in UKLLC will also link to additional datasets, such as education and employment data, if their participants already agreed to this. [Insert LPS name] will not link to this additional data and will continue to link only to health data.

Just as before, the data in the Trusted Research Environment will not include details that can identify you, such as name or address.

All research projects must be reviewed and approved by [Insert LPS name] data access committee before they can use your data. Deidentified data never leaves the Trusted Research Environment and can only be accessed by approved UK based researchers.

If you wish to opt-out of sharing your data with the UKLLC please get in touch with the [Insert LPS name] Study Team.

Credit: Extended Cohort for E-health, Environment and DNA (EXCEED)

For LPS joining the UK LLC#

Linkage to Health Records:

When you joined [Insert LPS name] we asked for your permission to link to your electronic health records. We are going to be working with the UK Longitudinal Linkage Collaboration (UK LLC) and the NHS to do this. It is important to know that researchers will never be able to identify you from your linked [Insert LPS name] and health record data.

This newsletter explains how the linkage process will happen, how your data will be managed in a safe and secure way, and what this means for you. If you have further questions please contact the [Insert LPS name] Study Team at [Insert LPS contact details]

Who is UK LLC?

UK LLC is a national collaboration of UK longitudinal cohort studies, universities, the NHS and UK statistical authorities. It is a unique resource that enables cross-sector research and supports research responses to immediate situations and future policy needs. UK LLC receives funding from UK Research and Innovation (UKRI) through the Medical Research Council (MRC) and Economic and Social Research > Council (ESRC).

Who will manage the linkage between my [Insert LPS name] data and my NHS health record data? How is UK LLC involved?

Linkage to your medical records
Linkage to your medical records will be managed through the NHS (by NHS Digital Health and Care Wales). The NHS will work with the UK LLC to link your health record data to your [Insert LPS name] questionnaire data, and make it available for research in a safe and secure way:

• The NHS will remove identifying personal information (such as your name) from your health records.

• The NHS will transfer your pseudonymised health information to the UK Secure eResearch Platform, or SeRP. No identifiable information will leave the NHS.

• Within the SeRP, your pseudonymised health information will be linked with your [Insert LPS name] questionnaire data. Any information that could be used to identify you will be removed.

• Your de-identified linked data from [Insert LPS name] participants will be made available to approved researchers via the SeRP Trusted Research Environment (TRE).

• Data in the TRE will not include the name, address, or date of birth, any real world ID numbers (like NHS ID), names of places where you live or work, or the names or IDs of hospitals or other service providers.

• Researchers will never be able to identify you from your linked [Insert LPS name] and health record data.

Who can apply to have access to my data?
Access to the anonymised linked data within UK LLC is very strictly controlled. Only UK-based researchers who have been approved by the Office for National Statistics (ONS), the UK LLC review panel and the [Insert LPS name] study team will be permitted to access it to conduct research.

Researchers who wish to undertake any analysis on study data are required to go through a strict data access process and will need to be approved by the study team and data access committee. Only research in the public interest will be approved.

How will approved researchers access my data?
Researchers will access and analyse the linked data within the UK LLC Trusted Research Environment (TRE). No data on individuals will be able to leave the TRE: only aggregated data (such as graphs or tables) may be extracted.

Can I refuse to have my data used in this way?
You have the right to withdraw your consent for data linkage, or to withdraw from the study altogether if you wish. To do so, contact the [Insert LPS name] Study Team: [Insert contact details]

Credit: The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers (UK-REACH)

For existing partner LPS and LPS joining the UK LLC#

A new way of working with longitudinal data is by combining data from many Longitudinal Population Studies to allow researchers to look at more people across diverse population groups, occupations and other factors to improve health and wellbeing and service provision. To do this, many studies need to put relevant data into a highly secure computing environment, known as either a Trusted Research Environment (TRE) or a Safe Data Haven (SDH) or a Secure Data Environment (SDE).

[Insert LPS name] is a partner with UK Longitudinal Linkage Collaboration, a Trusted Research Environment set up to bring data together for research in the public good.

Who is UK Longitudinal Linkage Collaboration (UK LLC)?

UK LLC is the national Trusted Research Environment for data linkage in longitudinal research. It is run by the Universities of Bristol and Edinburgh, in collaboration with University College London (UCL), Swansea University, University of Leicester and City St George’s, University of London. Their purpose is to bring together data about Longitudinal Population Study (LPS) participants that has been collected by their LPS or as part of their wider care and support and link it to participants’ health and other data.

The University of Bristol is the Data Controller for UK LLC and SeRP UK at Swansea University is the contracted Data Processor to University of Bristol for UK LLC. SeRP UK is a leader in providing this type of secure research server in the UK and internationally.

How does this work?

[Insert LPS name] provides UK LLC with de-identified copies of selected data. This includes (list study data in UK LLC TRE). We remain the owner and Data Controller and retain control of how the data is used in the UK LLC Trusted Research Environment. This makes sure the principles of [Insert LPS name] are upheld.

[Insert LPS name] provides a list of personal data (e.g. name, date of birth, address) to NHS Digital Health and Care Wales (DHCW). They are a NHS Trusted Third Party, which means they have the official approvals in place to handle data in this way. They do not see your study data. They then facilitate linkages by sending your personal identifiers to linked data owners [and UK LLC’s place-based (e.g. air pollution, noise pollution) modellers for processing]. These organisations extract and send de-identified datasets to SeRP UK who bring them together with your survey datasets. They then deposit your de-identified data into the UK LLC TRE. Through this split process, NHS Digital Health and Care Wales can only see your personal identifiers and SeRP UK and UK LLC can only see de-identified data about you.

Linked data owners: [copy where applicable]

• NHS England

• Public Health Scotland/eDRIS/National Records of Scotland in Scotland*

• Office for National Statistics in England and Wales

• SAIL databank

• NHS Northern Ireland Business Development Organisation*

• Northern Ireland Statistics & Research Agency*

not yet approved, no data has flowed

[Copy if applicable:]

[City St George’s, University of London and University of Leicester receive address data or postcode data only to link to the precise location of the property/postcode and then map information to the property, such as air pollution, noise data, services and the amount of green space around the property. They do not know which address relates to any person or their involvement in [Insert LPS name]. Randomly selected real UK addresses are added to the list to make sure nothing can be inferred from this process.]

Where and how is [Insert LPS name] data stored at UK LLC?

[Insert LPS name] data is stored on secure servers at SeRP UK, which are controlled by the University of Bristol and physically located at Swansea University. The servers are managed to information security best practice standards (including ISO 27001) and are regularly audited by external experts in information security.

Can I find out if [Insert LPS name] data held in the UK LLC Trusted Research environment has been approved for a research project?

UK LLC has a Data Use Register – https://ukllc.ac.uk/data-use-register – where you can view all approved and declined applications, with project summaries that provide a list of the UK LLC partner Longitudinal Population Studies that have been approved as part of each project and the aims of the research question.

The UK Data Protection Act 2018 provides individuals with rights over how their data are used. The UK LLC supports these rights. If you would like to find out more, read the full UK LLC privacy notice – https://ukllc.ac.uk/privacy-policy

Credit: Generation Scotland

Transitioning from COVID-19 research to general research for public good#

UK LLC is a collaboration of UK longitudinal studies, universities, the NHS and UK statistical authorities, funded by UK Research and Innovation through the Medical Research Council and Economic and Social Research Council. Linkage to your medical records will still be managed through the NHS by NHS Digital Health and Care Wales. Your personal identifying information will be shared with the NHS only in order to link to your health records. No identifiable information will leave the NHS.

Your data will be pseudonymised by the NHS and then linked with [Insert LPS name] study data within the UK Secure eResearch Platform (SeRP), hosted by the University of Swansea. It is then fully de-identified before being deposited in the SeRP Trusted Research Environment (TRE). (Data in the TRE will not include your name, address, or date of birth, any real world ID numbers (like NHS ID), names of places where you live or work, or the names or IDs of hospitals or other service providers.)

Access to only the anonymised linked data is very strictly controlled and only researchers approved by the Office for National Statistics, the UKLLC review panel and the [Insert LPS name] study team will be permitted to access it. Analysis will take place within the UKLLC trusted research environment and only aggregated data (such as graphs) may be extracted. Researchers will never be able to identify you. The Trusted Research Environment meets the highest Information Security Standards ISO27001 and Digital Economy Act Accreditation.

UK based, ONS approved, researchers may apply for access to the de-identified linked data held in UK LLC in order to undertake additional research in the public interest. Individuals who wish to undertake any analysis on study data are required to go through a strict data access process and will need approval by the study team and data access committee.

UK LLC’s activities are reviewed by a panel of data owners and data experts and a panel of public contributors. UK LLC make a set of key commitments which they promise to abide by (https://ukllc.ac.uk/our-promises).

You have the right to withdraw your consent for data linkage, or to withdraw from the study altogether if you wish. If you have any questions or would like to withdraw your consent, please contact the [Insert LPS name] Study Team on [Insert LPS contact information]

Update on our partnership with UK Longitudinal Linkage Collaboration:

Our study is a partner in UK Longitudinal Linkage Collaboration (UK LLC) and we are letting you know what is changing with them, why, and how it may affect you. UK LLC was created in 2020 as a research resource to support researchers doing priority research to help understand the impacts of the COVID-19 pandemic and develop new treatments. They have now received further funding from UK Research and Innovation, Economic and Social Research Council and Medical Research Council to continue to provide linked data for research.

What is changing?

UK LLC is preparing to make data available, within its Trusted Research Environment, for any public good research. Where participant agreement is already in place, plans are underway to link study data with administrative data (for example, education, employment, tax and benefits records).

What is the reason for this change?

By linking administrative data to existing study data and expanding the resource to any public benefit research, UK LLC aims to help researchers answer more research questions for the public good. It will enhance researchers’ ability to address important issues that affect people’s health and wellbeing. For example, they can examine how health and mental health conditions affect care provision among different socio-demographic groups, identify factors that can be modified to reduce risks, and understand the social impact of childhood adversity on adult health inequality.

How this will affect you?

[insert text relevant to your study and offer opt-out]

Credit: The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers (UK-REACH)

For LPS joining the UK LLC#

The UK Longitudinal Linkage Collaboration (UK LLC):

[Insert LPS name] is a partner in the UK Longitudinal Linkage Collaboration. It was created in 2019 as a research resource during the COVID-19 pandemic. It is run by teams of staff based at the Universities of Bristol and Edinburgh, with IT experts from the University of Swansea, environmental science experts at the University of Leicester, the NHS and the Office for National Statistics. The UK LLC involves members of the public across its governance who provide a supportive and influential role.

Linking data in this central way is good for science, as researchers can access linked data from many different UK population studies in one place. The UK LLC have now received further funding from UK Research and Innovation, the Economic and Social Research Council and the Medical Research Council to continue to provide linked data for research.

Read the UK LLC information for study participants on their website.

What does the UK LLC do?

UK LLC makes data available, within its Trusted Research Environment, for any public good research. Where participant agreement is in place, study data is linked with administrative data, such as health, education, employment, tax or benefits records.

It enhances researchers’ ability to address important issues that affect people’s health and wellbeing. For example, they can examine how health and mental health conditions affect care provision among different groups, identify factors that can be modified to reduce risk, and understand the social impact of childhood adversity on adult health.

This video gives an overview of how UK LLC works.

How does [Insert LPS name] share data with the UK LLC?

[Insert LPS name] provide the UK LLC with an anonymised copy of your data. To establish the linkage to health and wellbeing and other records we provide a list of your personal identifiers only (e.g. name, NHS ID, address) to the UK LLC. Only a small number of staff from the Universities of Bristol and Swansea can access the linked data.

Data from the studies taking part is anonymised before going into the UK LLC Trusted Research Environment. The data available to researchers in the Trusted Research Environment does not identify any individual, as details such as name and address have been removed and other potentially identifiable information (such as job title) changed so it is less specific. [In addition for health data, the UK LLC links to data about the place where study participants live to provide further context for research, for example air pollution data or access to broadband, but does not share participants’ address or postcode information.]

The data is stored on secure servers controlled by the University of Bristol (who are the Data Controller), the servers are located and run by the University of Swansea (who are the Data Processor for the University of Bristol). [Insert LPS name] remains the Data Controller 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 [Insert LPS name] are upheld.

Credit: Understanding Society

FAQs about UK LLC