LONGITUDINAL ADMINISTRATIVE DATA SPINE SCOPING PROJECT GRANT FOR THE SPF UK POPULATION LAB WAVE I

Lead Research Organisation: University of Bristol
Department Name: Social Medicine

Abstract

This project will gather evidence to inform the development of longitudinal research data resources and to respond to core recommendations from the 2017 UK Economic and Social Research Council's (ESRC) Longitudinal Studies Review. The UK has a long history of running longitudinal population studies, where members of the public are invited to take part in research based on a set of characteristics (e.g. they were all born in the same week). Researchers then follow-up on these people's health and wellbeing over time with the aim of understanding why people's health, development and life outcomes differ, and how we can improve health and social systems to further the public good. New data science opportunities and increasing digitisation of routinely collected health and social data mean there are new opportunities to improve this type of research and new opportunities to improve the public good.

This project will gather evidence to support ESRC and Health Data Research UK (HDRUK) in assessing the feasibility and potential value of a longitudinal Administrative Data Spine (ADS). An ADS can be summarised as a register containing a record of every member of the UK population, their contact details and which has been enhanced with key health and social information (such as health status, age, sex, household and neighbourhood characteristics, social and economic status). This ADS could be a research tool to:

1) select and invite members of the public into new longitudinal research studies. When doing this it is important that those invited are representative of the wider population so everyones circumstances can be studied and everyone - including the vulnerable or disadvantaged - can benefit from the improvements that longitudinal research can bring;
2) understand if existing studies represent the wider population so that policy makers can understand how to interpret study findings when designing policies; and to understand if the way in which recruitment to the study, people stopping taking part in the study, or if data quality issues have introduced error or bias into study findings and to inform statistical methods that can be used to control for bias or impaired representation;
3) link to study participants routinely generated records (e.g. their health, education, benefits, employment, criminality records) in order to collect new data for research which may be more accurate, or very technical;
4) understand the operational and scientific opportunities and to control the scientific challenges where people in UK longitudinal research take part in more than one study (2 to 3 million UK citizens are take part in longitudinal studies).
5) the ADS could also be useful to run 'population data laboratory' research designs, where longitudinal studies are used in research based on local, regional or national databases of people's records. This type of research brings the benefits of longitudinal records (detailed data and biosamples provided by people directly over time) coupled with the benefits of routine records (records which capture information on health events or the use of government services over time);

An ADS would need to be constructed from diverse sources, including those held by government departments, the Office for National Statistics and the NHS. It is anticipated that some of this information will be held at a UK level; some at a devolved administration level; and others at a local/city/regional level. This projects, and other projects running at the same time, aim to gather the views and experience of academic researchers, health professionals, government officials and importantly the public on what such a research resource could do, how it should be constructed and what measures would need to be put in place to allow it to operate with the support of data owners and the public.

Planned Impact

NA

Publications

10 25 50
 
Description This project has two distinct elements:

1) It is building up a body of evidence to understand the feasibility and acceptability of using population data to help ensure longitudinal research is more accurate and inclusive, particularly of marginalised and vulnerable individuals. The evidence will be written up into a report and presented to the ESRC to help them and the wider longitudinal research community develop policy and practice relating to the use of data in for these aims.
2) it is conducting exemplar research in the Bristol, North Somerset and South Gloucestershire area aiming to develop a better understanding of the patterns and predictors of self-harm within adolescents in the area. This research has a potential direct benefit to those who self-harm and those who care for these individuals. It also illustrates the potential for population data to help ensure this type of research is accurate and inclusive. To date the research team have worked with the local NHS to identify how local health records can be used with longitudinal studies data in order to enable this research and deliver these benefits. The approach to this (in terms of legal basis) sets a broader precedent for this type of research across England.
Exploitation Route The insights gained through this award are now helping inform the design of the UK Longitudinal Linkage Collaboration (UK LLC) which is a major new UK infrastructure investment designed to support the UK's National Core Studies for COVID-19 research. The UK LLC will for the first time establish a Trusted Research Environment for longitudinal research; where ~15 major UK longitudinal studies with 1-2m participants will deposit COVID-19 relevant data and have the UK LLC systematically establish linkages to health, administrative and environmental records for these participants. The integrated data will be made available for COVID-19 research designed to inform the UK's most pressing research questions. This award informs the design for the linkage and data management of environmental records as well as an understanding of which safeguards are needed to ensure this work is secure and acceptable. Specifically, the design of the linkage functionality is informed by scoping study insights; establishing the consortium of contributing studies was assisted through the network established in the scoping study.

Insights from the scoping study linkage work are also supporting Bristol's contribution to the premier Administrative Data Research UK project linking Department for Education records with Ministry of Justice records in the 'data first' project (https://www.adruk.org/news-publications/news-blogs/expert-team-appointed-to-test-potential-of-moj-dfe-linked-dataset-234/).

Project reports detailing the project findings will be developed with the ESRC and communicated widely. A sub-set of findings will be published in peer-review scientific journals and disseminated via conferences and other academic venues. The findings of the exemplar research will be communicated to health commissioners in the Bristol, North Somerset and South Gloucestershire area (and to other national equivalents using NHS special interest networks).
Sectors Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice

URL https://esrc.ukri.org/files/funding/funding-opportunities/exploring-population-data-for-inclusive-research/
 
Description Exploring Population Data for Inclusive Research: A scoping project (Summary Report)
Geographic Reach National 
Policy Influence Type Implementation circular/rapid advice/letter to e.g. Ministry of Health
Impact A summary report from my secondment findings is supporting the ESRC with the design and delivery of their Early Life Cohort (ELC). This in turn is designed to be a major UK research investment which will support the understanding of intersections between UK families with young children and social, health and environmental factors and to improve the effective delivery of services and to enhance policy effectiveness in this area.
URL https://esrc.ukri.org/files/funding/funding-opportunities/exploring-population-data-for-inclusive-re...
 
Description Member of Department for Education Technical Advisory Committee for Children2020s birth cohort
Geographic Reach National 
Policy Influence Type Participation in a advisory committee
Impact Insights from my work on ALSPAC's linkage programme and the ESRC Longitudinal Administrative Data Spine Scoping Pproject (SPF UK POPULATION LAB WAVE I) are contributing to the design of a new Department for Education birth cohort study which is intended to help shape DfE policy going forward. Through effective design and delivery of the cohort, there is the potential to shape policy decisions and intervention designs for large numbers of children in England.
 
Description COVID-19 Longitudinal Health and Wellbeing - National Core Study (LWH-NCS)
Amount £9,862,000 (GBP)
Funding ID MC_PC_20030 
Organisation Medical Research Council (MRC) 
Sector Public
Country United Kingdom
Start 10/2020 
End 03/2021
 
Description Home Office / ADR UK Feasibility Study Lead Academic
Amount £79,574 (GBP)
Funding ID ES/V002929/1 
Organisation Economic and Social Research Council 
Sector Public
Country United Kingdom
Start 03/2020 
End 09/2020
 
Title UK Longitudinal Linkage Collaboration (UK LLC) 
Description A novel pan-UK and interdisciplinary Trusted Research Environment for longitudinal research which will host the COVID-19 relevant data of ~15 major UK longitudinal studies and systematically link the participants of these studies to health, administrative and geospatial (natural environment and neighbourhood) records. The UK LLC has a bespoke governance framework that will enable any legitimate researcher to apply for access and subsequently - if approved - gain access to a project specific sub-set of the available data within a secure analysis environment. The UK LLC is designed to be sustainable and scalable to other (non-COVID-19) use cases. It has an active public/participant involvement and engagement aspect which aims to improve the design of the resource through public involvement and to help ensure the resource is sustainable and acceptable. 
Type Of Material Improvements to research infrastructure 
Year Produced 2020 
Provided To Others? No  
Impact The UK LLC is a critical component of the Longitudinal Health & Wellbeing National Core Study which has been commissioned by the UK Chief Scientific Advisor in response to the COVID-19 pandemic. 
 
Description Bristol Health Intelligence Partnership 
Organisation NHS South, Central and West Commissioning Support Unit
Country United Kingdom 
Sector Public 
PI Contribution ALSPAC with NIHR Arc West are collaborating with the NHS South, Central West Commissioning Support Unit (NHS SCW CSU) to identify the governance and technical pathways to integrate ALSPAC data into regional health and social care data managed within the Bristol, North Somerset and South Gloucestershire Commissioning Support Unit. The objective is enable applied health research with feedback loops into local NHS care provisioning.
Collaborator Contribution NHS SCW CSU have provided governance and technical expertise to help inform the governance structure and methodologies needed to realise this objective.
Impact The insights from this have been distilled into a 'Blueprint' technical report.
Start Year 2019
 
Description Public dialogue exploring attitudes to the use of administrative data to ensure inclusivity in longitudinal research. 
Organisation Kantar Group
Country United Kingdom 
Sector Private 
PI Contribution This is an ESRC commissioned piece of research to understand public views on the use of routine data in longitudinal research. * I contributed to the drafting of a literature review entitled "Public support for accessing and linking data about people from various sources: Literature review" (lead author E Kispeter, Warwick Institute for Employment Research). * I am a member of the Oversight Board through which I have helped steer the design of the dialogue research, the topics to be considered and the materials to be used. I have directly produced some of the materials used across the national dialogue meetings. * I have attended the two Birmingham dialogue meetings where I presented a case study and helped answer questions from the public. * I have sat on the tender review panel for a follow-on piece of research.
Collaborator Contribution The dialogue workshops are led by the University of Warwick and are being run and managed by Kantar Public (contracted to the University of Warwick).
Impact A report has been prepared and submitted to the ESRC. (Public support for accessing and linking data about people from various sources: Literature review, Warwick Institute for Employment Research). Data Collection is ongoing.
Start Year 2019
 
Description Public dialogue exploring attitudes to the use of administrative data to ensure inclusivity in longitudinal research. 
Organisation University of Warwick
Department Institute for Employment Research
Country United Kingdom 
Sector Academic/University 
PI Contribution This is an ESRC commissioned piece of research to understand public views on the use of routine data in longitudinal research. * I contributed to the drafting of a literature review entitled "Public support for accessing and linking data about people from various sources: Literature review" (lead author E Kispeter, Warwick Institute for Employment Research). * I am a member of the Oversight Board through which I have helped steer the design of the dialogue research, the topics to be considered and the materials to be used. I have directly produced some of the materials used across the national dialogue meetings. * I have attended the two Birmingham dialogue meetings where I presented a case study and helped answer questions from the public. * I have sat on the tender review panel for a follow-on piece of research.
Collaborator Contribution The dialogue workshops are led by the University of Warwick and are being run and managed by Kantar Public (contracted to the University of Warwick).
Impact A report has been prepared and submitted to the ESRC. (Public support for accessing and linking data about people from various sources: Literature review, Warwick Institute for Employment Research). Data Collection is ongoing.
Start Year 2019
 
Description CLOSER Data Linkage Community of Practice Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Andy Boyd chairs the CLOSER Data Linkage Community of Practice Group. This group is designed to share insights relating to data linkage amongst those working in this field in longitudinal research. The group also seeks to jointly identify mechanisms to address common barriers to linkages or to develop improved ways of working.
Year(s) Of Engagement Activity 2019,2020,2021
URL https://www.closer.ac.uk/our-networks/
 
Description Contribution to public dialogues exploring the use of population data in longitudinal research 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Public/other audiences
Results and Impact Contributed to the design, operation and assessment of a national public dialogue on the use of population data in longitudinal research.
Year(s) Of Engagement Activity 2020,2021
URL https://esrc.ukri.org/files/news-events-and-publications/publications/promoting-public-engagement-wi...
 
Description Edinburgh Study of Youth Transition and Crime - Study Scientific Advisory Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach Regional
Primary Audience Professional Practitioners
Results and Impact Contributing record linkage and study management expertise to the Edinburgh Study of Youth Transition and Crime.
Year(s) Of Engagement Activity 2020,2021
 
Description National Surveys of Sexual Activities and Lifestyle - Study Scientific Advisory Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Contributing record linkage and study management expertise to the National Surveys of Sexual Activities and Lifestyle.
Year(s) Of Engagement Activity 2020,2021
 
Description Wellcome LPS COVID Steering Group 
Form Of Engagement Activity A formal working group, expert panel or dialogue
Part Of Official Scheme? No
Geographic Reach National
Primary Audience Professional Practitioners
Results and Impact Contributing record linkage and study management expertise to the Wellcome LPS COVID Steering Group.
Year(s) Of Engagement Activity 2020,2021