Suchergebnisse

ObjectivesDeveloping a rigorous application process for linked data within the UK Longitudinal Linkage Collaboration's Trusted Research Environment (TRE) included balancing the requirements of >20 longitudinal studies and several data providers with the need to provision data to researchers in a safe, ethical and efficient manner.
ApproachUK LLC was commissioned as a resource to enable the investigation of COVID-19 questions: a secure setting where longitudinal population studies (LPS) can be linked efficiently to regularly refreshed NHS electronic health records, and then accessed by researchers. UK LLC received funding to continue as a resource for any research in public good and to link to the administrative records (education, occupation, tax and benefits). To accommodate the constraints imposed by a new set of data controllers and to account for wide variety of proposals expected, we expanded our data access process.
ResultsUK LLC has a three-stage application and review process. The addition of administrative data meant that there is additional review for those applications requesting that data (Stage 4) and need to align processes with the UK Statistics Authority. There is also need to review complexity of the data requests and ethical implications of any application to access the data. We have developed an ethics decision tree to help guide the decision making around ethics requirements.
ConclusionOur process is evolving as we are trying to meet the challenge of balancing the needs of >20 studies, stakeholders, applicants, and participant/public contributors, to create a process that can handle complex needs and requirements.

ObjectivesOur Trusted Research Environment (TRE) provides a centralised infrastructure to pool Longitudinal Population Studies' (LPS) data and systematically link participants' routine health, administrative and environmental records. All data are held in a centralised research resource which is now certified by UK Statistics Authority as meeting the Digital Economy Act standard.
ApproachWe have created an unprecedented infrastructure integrating data from interdisciplinary and pan-UK LPS linked to participants' NHS England records with delegated access responsibilities. Integrated and curated data are made available for pooled analysis within a functionally anonymous DEA and ISO 27001 accredited TRE. We developed a bespoke governance and data curation framework with LPS data managers and Public/participant contributors. New data pipelines are being built with partners at ADRUK and the Office of National Statistics to link non-health records. Our design supports long-term sustainability, linkage accuracy and the ability to link data at both an individual and household level.
ResultsThis organisation is a collaboration of >24 LPS with ~280,000 participants. Participants' data are linked to NHS records and geo-coded environmental exposures. This resource is now accessible for public benefit research for bona fide UK researchers. Administrative data including tax, work and pensions, and education are being added to the resource. This data flow is enabled by: (1) a model where TTP processes participant identifiers for many different data owners; (2) creation of a novel longitudinal data pipeline, enabling linkage, data extraction and update of records over time; (3) an access framework where Linked Data Access Panel considers applications on behalf of data owners (e.g., the NHS), with review by a Public Panel and distributing applications to LPS for approval of appropriate data use.
ConclusionOur organisation provides a strategic research-ready platform for longitudinal research. We are extending linkages of LPS participants to previously inaccessible datasets. The research resource is positioned to allow researchers to investigate cross-cutting themes such as understanding health and social inequalities, health-social-environmental interactions, and managing the COVID-19 recovery.

ObjectivesThe COVID-19 Longitudinal Health and Wellbeing National Core Study utilises data from Longitudinal Population Studies (LPS) and whole-population NHS databases: yet no resource existed linking multiple LPS to COVID-19 records. A centralised infrastructure was needed to pool LPS data and systematically link participants' routine health, administrative and environmental records.
ApproachThe UK Longitudinal Linkage Collaboration (UK LLC) is an unprecedented infrastructure integrating data from major inter-disciplinary and pan-UK LPS and systematically linking these to participants' COVID-19 relevant records. Integrated and curated data are made available for pooled analysis within a functionally anonymous Trusted Research Environment (TRE). We commissioned a "Secure eResearch Platform - SeRP" to provide an underlying secure computing system including trusted third-party processing of participant identifiers. We developed a bespoke governance and data curation framework designed collaboratively with LPS data managers and with an access mechanism enabling LPS to retain key decision-making controls. Public/participant involvement guided our approach.
ResultsData from >20 LPS and >250,000 Participants' are linked to NHS records (primary, secondary, community care; COVID-19; civic registers; prescriptions; mental health) and geo-coded environmental exposures (pollution, green space, neighbourhood indicators). UKLLC is now accessible to UK-wide researchers for COVID-19 research. Our pipeline/resource/provision of linked data is based on three key innovations: (1) a "Linkage brokerage" model where our trusted third-party processes participant identifiers for many different data owners; (2) a novel longitudinal data pipeline with NHS records which enables linkage and data extraction and update of records over time; (3) a "Delegated & Distributed Access Framework" enabling UK LLC Data Access Panel to consider applications on behalf of data owners (e.g., the NHS) whilst distributing applications to LPS for approval of appropriate data use.
ConclusionUK LLC provides a strategic research-ready platform for longitudinal research: a clear step change from pre-pandemic capability. With sustained investment, and through exploring options to extend linkages and generalise to wider purposes, UK LLC is positioned to inform cross-cutting themes such as understanding health and social inequalities, health-social-environmental interactions, and managing the COVID-19 recovery.

ObjectivesThe UK Longitudinal Linkage Collaboration (UKLLC) was established to link and integrate data from many longitudinal population studies (LPS) with participants' records from diverse governmental data owners across the UK. The UKLLC aims to unify disparate requirements from many data owners in different legal jurisdictions into one, predictable, access framework.
ApproachThe UKLLC framework provides a legal and governance 'funnel' which enables diverse data owner requirements to be captured; for UKLLC to centrally control these; and - from a research applicants perspective - there to be a predictable single process that is bound into emerging national standards for data science (e.g., the 'Five Safes' framework). This is applied through a Trusted Research Environment (TRE) approach where ISO27001 and Digital Economy Act accredited contracts, data sharing agreements, policies and procedures define and permit data flows and provide organisational separation of key functions including the third-party processing of participant identifiers for linkages.
ResultsWe developed a project review mechanism enabling UKLLC to efficiently process applications whilst respecting core data owners requirements: each aspect of this is tailored to relevant legal, jurisdictional and accreditation requirements. Contracting specialist processors enabled UKLLC to implement 'organisational separation' between use of participant identifiers and de-personalised data, enabling a 'functionally anonymous' approach facilitating efficient onward sharing of integrating data.
The processes we have developed promote transparency and trust with regulators, participants and public. UKLLC host (University of Bristol) is able to be the data controller of data within the UKLLC; make application decisions; create the Licenced Dataset; and, curate and reuse data and metadata products of the research whilst data is maintained functionally anonymous. Large-scale complex linked data-sets are provisioned in a timely manner.
ConclusionThe UKLLC is part of a large ecosystem of organisations. A delegated and distributed model has been established supported by our contracts and policy. This configuration has allowed the delivery of cross-cutting data-sets to address priority Covid-19 research questions and a generalisable and sustainable model for the future

ObjectivesThe UK Longitudinal Linkage Collaboration (UK LLC) is a new, unprecedented infrastructure enabling research into the COVID-19 pandemic. The UK LLC integrates data from >20 UK longitudinal studies with systematically linked health, administrative and environmental records to facilitate cross-disciplinary COVID-19 research for accredited UK based researchers.
ApproachBringing together all of the key components that form the UK LLC was a huge challenge that may have only been possible in the midst of the pandemic. First, we collaborated with the Longitudinal Population Studies (LPS) to create and agree how data linkage, data provision and applications to access the UK LLC would work. In parallel, public contributors helped to create fair processing materials. Finally, we worked closely with NHS Digital and other key national data providers to organise approvals for all studies to be linked, and for the UK LLC to have delegated decision-making for research applications.
ResultsWe faced a myriad of challenges creating the UK LLC including:

Short timeframe and short-term funding structure – initial funding for six months with an 18-month extension.
Working across >20 different LPS and four nations with different structures for access, consent and data provision.
Lack of capacity at various points in the data pipeline due to the volume of COVID-19 research required and underway across the involved organisations.
Data processing complexities – split data method means no one can see the entire process therefore catching linkage errors requires working across four different organisations.
With such complex data flows it is challenging to find the balance with communications about data to the public – being accurate about what we are doing, but expressing the complexity in lay terms.

ConclusionCreating the UK LLC required collaboration with LPS, data providers and researchers. An iterative approach to creating the data application and data provision pipelines was crucial in developing these processes. The UK LLC was built quickly, from initial funding in October 2020 to provisioning data to researchers in December 2021.

ObjectivesDevelop administrative linkages within a national Trusted Research Environment (TRE) that hosts Longitudinal Population Study (LPS) data for over 20 LPS. We will describe the methodological development carried out to enable linkage to administrative datasets. These linked administrative data will support research for public good, informing policy and practice.
MethodsThe first sets of administrative data under consideration in this Feasibility Study are from the Department of Work and Pensions (DWP), the Department for Education (DfE) and HM Revenue and Customs (HMRC). Working with UK Government departments through a Task & Finish group we have gathered input from DWP, HMRC and DfE and Office for National Statistics (ONS) data sharing experts. The Task & Finish group identified three pragmatic data linkage and data sharing models, that would enable data to be linked via a newly designed secure data pipeline in a legal, secure, and trustworthy manner for all stakeholders.
ResultsTo encourage sustainability and acceptability, a model designed to be maintained over a long period is based on the re-use of Departmental Personal Identifiable Information (PII) – i.e., name, date of birth, gender, National Insurance number - and attribute data already deposited by the Departments into ONS. ONS will develop for the linkage and extraction of ONS Data into the TRE a system which conducts, and quality assesses the linkage; minimises the Departmental data to participants within the TRE only and the variables specified in the agreements; and, de-identifies the data to their DEA processing standards. The minimised and functionally anonymous data extract will be securely transferred for ingest and integration into the TRE enabling researchers to address a wider range of questions for public benefit.
ConclusionThis is a model for efficient and low-burden linkages to inform cross cutting research. It will form part of a responsive UK data science capability which can inform government research needs and be used to meet future crisis e.g. new pandemics, the impacts of climate change or economic shocks.

BackgroundUK Longitudinal Linkage Collaboration (UK LLC) is the national Trusted Research Environment for the UK's longitudinal studies. The need for a clear way to communicate Longitudinal Population Study (LPS) participants' rights was identified through public contributor consultations. UK LLC gathered public views to inform meaningful discussion with NHS England, the National Data Guardian's Office, and the Health Research Authority to develop a new framework for agreeing consistency in assessment of the legal basis for linking participant self-reported data to participants' health records. The consultation flagged that the legislation around LPS data is complex, confusing, and often inaccessible. This means that it may prove difficult for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.
IntroductionThe legal basis for using LPS data is complex. Of particular importance are the UK GDPR (General Data Protection Regulations), Common Law Duty of Confidentiality, Digital Economy Act (DEA) 2017 and Section 251 of the NHS Act 2016. Our vision was to produce transparency materials to help LPS participants understand LPS data and the law.
MethodsWe surveyed public contributors from UK LLC, Health Data Research UK and DATAMIND to establish current understanding. We worked in partnership with UK LLC's Public Advisory Group (PAG) and external organisations to produce a series of infographics (over time also available in audio, BSL and additional languages) to reach as wide an audience as possible. We collaborated with DATAMIND throughout the project sharing insights and ideas.
ResultsA total of 56 people participated in the survey, most of whom lived in England: 30% were LPS participants; 55% were aged 55 and over; and 18% identified as belonging to an ethnic minority group. Survey results showed that the levels of awareness of the laws/legal principles relating to the use of LPS data is generally low. The DEA was least well-known, with 11% of people aware of this legislation. The most well-known among the infographic topics was GDPR, with 88% awareness. We co-developed key messages for LPS participants on what they should be aware of as individuals, including what they should expect from their LPS. This was not a straightforward process due to the exemptions and conditions under each law/legal principle. This led to focus on highlighting the practical implications for participants rather than explaining the laws/legal principles. Across the series, participants are directed to official organisations for further information.
ConclusionsThis series of transparency materials provides a more accessible and easy-to-understand way for LPS participants to fully understand who is allowed to access their data, for what purposes, under what circumstances and what their rights are.

ObjectivesWe created a panel with members of the public and longitudinal study participants who review our data access requests. This panel forms an integral part of our data access application process, giving the public a say who can access the data for research.
MethodsWe advertised our lay member vacancies using social media, newsletters, word of mouth and the internet. We appointed six people to the public panel. Our panel includes study participants, NHS service users, parents, carers, and people with experience of disability, neurodiversity, and long-term health conditions.
The Panel Terms of Reference were created with help from stakeholders and study teams involved in longitudinal studies that involve the public in data access applications. This ensured that the purpose of the panel was clear. The panel reviews lay summaries and makes sure that researchers have adequate public involvement in their project.
ResultsPanel members have reviewed 28 applications. Researchers present their research at an online meeting with the panel then answer questions from the panel members. We publish meeting minutes on our website for transparency.
A 6-month review was overwhelmingly positive - all panel members indicated they felt valued. They felt able to challenge and question researchers as part of the data access application process. This provides a level of public scrutiny to our work.
"I feel there's a real value in the panel. You get a real sense that this has got such potential to make a contribution." (panel member)
We are further developing the Panel Terms of Reference with panel members. We will consider additional areas of responsibility, for example, public benefit review.
ConclusionWe regularly review how to improve public involvement in our work. The panel has proven its value during our application process. Therefore we are exploring with the panel a new approach to assess the public benefit of applications and what is meant by 'public benefit research'.