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.
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
Shiells K
(2022)
Participant acceptability of 'digital footprint' data collection strategies: evidence from the ALSPAC birth cohort study
in International Journal of Population Data Science
Mummé M
(2023)
The Bristol Self Harm Register (BSHR) dataset: Linked self-harm register records of the children in the Avon Longitudinal Study of Parents and Children (ALSPAC)
in Wellcome Open Research
Mummé M
(2022)
Characterising the index mothers in the Avon Longitudinal Study of Parents and Children (ALSPAC) who are also UKBioBank participants
in Wellcome Open Research
Tuckett A
(2019)
Health and Care Intelligence: A Blueprint for Data Access
| 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/). The initial governance report from the BNSSG exemplar is supporting the HDR UK South West 'better care partnership' model for a local TRE and also COVID-19 studies such as COMMINS (school based COVID-19 study). 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 | The Longitudinal Administrative Data Spine Scoping Project was design to review and inform practice within the longitudinal research community at its broadest - including the academic LPS (studies, applied and methodological researchers), data providers (particularly the NHS and Office for National Statistics) and UKRI. Given the focus of this section of ResearchFish (non-academic outputs - primarily the UK Longitudinal Linkage Collaboration, which is the primary output influenced by this work), this narrative summary focuses on data providers and UKRI. (1) NHS Data Providers: my report highlighted the inclusion and Equity advantages and cost benefits of using individual-level data to inform sampling and recruitment over the use of aggregated neighbourhood level sampling. NHS DigiTRIALS provides a mechanism for this. During 2022 I advised the NATSAL sexual health LPS and NATCEN (NATSAL's contracted fieldwork agency) on using DigiTRIALS for the NATSAL 4 sampling and recruitment process. I brokered a relationship between the parties, and we held exploratory workshops to test the functionality of DigiTRIALS for non-clinical sampling and recruitment. This provided considerable knowledge exchange to NHS Digital on this issue. While there was considerable potential for this, and willingness from NHS Digital to proceed, this ultimately did not progress because access to required sampling data (primarily Ethnic coding) was restricted to COVID-19 research only due to current restrictions on using GP data in research. Nonetheless, this suggests that DigiTRIALS might be an appropriate mechanism in future were these restrictions to be lifted. (2) Regional NHS: The governance 'blueprint' produced to illustrate the basis for linking NHS and non-health data at a regional level, including the basis for including LPS data into such a resource, is now being used to inform the development of the NHS South West of England Secure Research Environment. This will be one of the UK's regional SDEs and has potential to enable LPS such as ALSPAC to embed data into local public health analysis and to utilise cross-cutting population health management in the South West of England. (3) UKRI: Consideration of Equality, Diversity and Inclusion (EDI) is of increasing importance on the UKRI agenda. This was in part reflected in the commissioning of this piece of work and its focus on using routine data for inclusive longitudinal research aims. The review and report identified for the first time the duty on UKRI to consider Equality Act considerations in the design and commissioning of Longitudinal Studies (although, it is important to note that these considerations did already feature in commissioning, but were not previously framed in this way). Feedback indicates that ESRC Data & Infrastructure are now completing Public Sector Equality Duty templates as part of submitting business case for investment to DSIT/HMT. In addition to this, EDI is an element of the Data Infrastructure Strategy delivery plan - manifesting itself in a number of aspects (including for example, peer review). Finally, the report & recommendations are helping inform some current commissioning activity in ESRC D&I and more broadly to inform D&I planning and development. |
| First Year Of Impact | 2020 |
| Sector | Government, Democracy and Justice |
| Impact Types | Policy & public services |
| Description | ADR England Data Linkage Steering Group |
| Geographic Reach | National |
| Policy Influence Type | Membership of a guideline committee |
| URL | https://www.adruk.org/ |
| Description | Andy Boyd took part in a Kantar Public interview, commissioned by CLS |
| Geographic Reach | National |
| Policy Influence Type | Contribution to new or Improved professional practice |
| Impact | This PPIE work has informed the design of the CLS run pilot of the new ESRC funded birth cohort study. |
| Description | British National Surveys of Sexual Attitudes and lifestyles (NATSAL): |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/advisory committee |
| URL | https://www.natsal.ac.uk |
| 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 | Lobbying to help ensure the NHS Digital GPDPR dataset is suitable for use in longitudinal studies |
| Geographic Reach | National |
| Policy Influence Type | Implementation circular/rapid advice/letter to e.g. Ministry of Health |
| Impact | This lobbying raised awareness of the needs of longitudinal studies in relation to GPDPR and specifically that not all longitudinal studies are consented and that the longitudinal studies have a specific national TRE (UK Longitudinal Linkage Collaboration) and local TRE solutions. Reassurances were provided by NHSX and NHSDigital that there was a need to be able to use GPDPR data within a range of high-quality TRE settings not just the NHS Digital TRE and that consent alternatives would be explored within this context. |
| URL | https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-... |
| Description | Member of Department for Education Technical Advisory Committee for Children2020s birth cohort |
| Geographic Reach | National |
| Policy Influence Type | Participation in a guidance/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 |
| Description | UK LLC pilot submitted through the ADR UK mechanism but funded with joint contributions from ESRC and MRC |
| Amount | £909,136 (GBP) |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2022 |
| End | 03/2025 |
| 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. |
| Title | UK Longitudinal Linkage Collaboration |
| Description | UK Longitudinal Linkage Collaboration (UK LLC) is a centralised infrastructure service for data linkage for longitudinal population studies (LPS) and a pan-UK, interdisciplinary, Trusted Research Environment (TRE) for the secure, pooled, analysis of diverse LPS data. This global first provides a national research capability for academia, policy makers and industry. UK LLC has combined data from >20 LPS with >200,000 participants. Participants' data have been 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). UK LLC is a collaborative endeavour of the LPS community for the benefit of the LPS and wider longitudinal research community. UK LLC has support from >20 major UK interdisciplinary studies spanning 75 years of follow-up. These studies include many flagship MRC/Wellcome Trust studies and the ESRC priority investments: Avon Longitudinal Study of Parents and Children, ALSPAC; Born in Bradford, BiB; Centre for Longitudinal Studies (inc. National Child Development Survey NCDS58, British Cohort Study BCS70, Millennium Cohort Study MCS, Next Steps); COMPARE; English Longitudinal Study of Ageing, ELSA; European Prospective Investigation of Cancer, Epic-Norfolk; Extended Cohort for E-health, Environment and DNA, EXCEED; Fenland; Generation Scotland; Genetic Links to Anxiety and Depression, GLAD; INTERVAL; National Study of Health and Development, NHSD46; NIHR Bioresources, including STRIDES and COPING; Northern Ireland Cohort of Longitudinal Study of Ageing, NICOLA; Southall and Brent Revisited, SABRE; Track-COVID; Twins Early Development Study, TEDS; Twins UK; UK Household Longitudinal Study, Understanding Society. The development of the UK LLC was informed by precedents from ALSPAC & Born in Bradford (through the MRC support Mental Health Pathfinder project); Generation Scotland; CLOSER (through the Data Linkage programme) and through Andy Boyd's secondment to ESRC to scope the potential for using population data for inclusive longitudinal research. The UK LLC concept was further informed through input from Data Managers from across our 'vanguard group' of contributing LPS and with public involvement (through the UK LLC public involvement strand and through insights from contributing studies participant groups). |
| Type Of Material | Database/Collection of data |
| Year Produced | 2021 |
| Provided To Others? | Yes |
| Impact | The UK Longitudinal Linkage Collaboration is intended initially as a resource to support the research programme of the Longitudinal Health & Wellbeing National Core Study. There are currently 11 approved projects using UK LLC from the LHW NCS and other National Core Studies. The research from these is ongoing. There are notable methodological outputs from the UK LLC which include: (1) a novel governance structure accommodating the needs of many (n=24) UK longitudinal studies and major data owners (Eg, NHS Digital) into a common framework; (2) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) for their Trusted Third Party to act as a 'linkage broker' and manage participants from many studies into one data processing pipeline; (3) novel enhancements to Secure eResearch Platform data science infrastructure (Swansea University) to 'record link' participants from many studies into one pooled 'super cohort' accounting for complex overlap between study membership and shared residence (ie, where participants are members of multiple studies, where occupants of a single residence are in one or more studies); (4) a transformational data pipeline to extract records of study participants from across NHS Digital records accounting for different legal bases and changes in permissions over time; (5) a novel data access process enabling a single point of application to request access to data from 24 LPS with linked records. |
| URL | https://ukllc.ac.uk/ |
| 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. The Blueprint is now informing the development of the 'SystemWide dataset' by BNSSG Integrated Care System and is supporting the activities of the HDR UK South West Better Care partnership. |
| 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 published by the ESRC: https://esrc.ukri.org/files/news-events-and-publications/publications/promoting-public-engagement-with-longitudinal-research/ This evidence informed my report to the ESRC on using population data for inclusive longitudinal research: https://esrc.ukri.org/files/funding/funding-opportunities/exploring-population-data-for-inclusive-research/ This report is informing the design of new research infrastructure (including the UK Longitudinal Linkage Collaboration - https://ukllc.ac.uk/) and the design of new longitudinal studies being designed by ESRC and MRC and also the NHS's Our Future Health study. |
| 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 published by the ESRC: https://esrc.ukri.org/files/news-events-and-publications/publications/promoting-public-engagement-with-longitudinal-research/ This evidence informed my report to the ESRC on using population data for inclusive longitudinal research: https://esrc.ukri.org/files/funding/funding-opportunities/exploring-population-data-for-inclusive-research/ This report is informing the design of new research infrastructure (including the UK Longitudinal Linkage Collaboration - https://ukllc.ac.uk/) and the design of new longitudinal studies being designed by ESRC and MRC and also the NHS's Our Future Health study. |
| 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. The following studies/organisations are currently represented on the working group: 1946 National Survey of Health and Development; the 1958, 1970 and 2000-01 birth cohorts; the Avon Longitudinal Study of Parents and Children; Born in Bradford; British Regional Heart Study; Department for Education; Generations Study; Hertfordshire Cohort Study; Health and Employment After Fifty Study; Million Women's Study; Growing Up in Scotland; Northern Ireland Cohort for the Longitudinal Study of Ageing; Southampton Women's Survey; Twins UK; UK Womens Cohort Study; and Understanding Society. |
| 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 | Invited to Present - Understanding Data for Population Research. Economic and Social Research Council Strategic Advisory Group. UK: |
| 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 (PI of the ESRC ADS Scoping Study) provided a summary of the scoping study findings to the Economic and Social Research Council Strategic Advisory Group. |
| Year(s) Of Engagement Activity | 2021 |
| Description | NHS DigiTRIALS and NATSAL LPS sampling workshop (July 2022) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Professional Practitioners |
| Results and Impact | A workshop held between NHS DigiTRIALS, NATSAL LPS Executive (UCL) and NATSAL. Andy Boyd chaired a knowledge exchange workshop to consider how DigiTRIALS could be used to conduct/support sampling and recruitment using individual-level data. The workshop explored functionality, ethics and governance and the requirement for socio-economic indicators for sampling. There was a focus on inclusion and the objective of identifying heterogenous sampling frames. The need for indicators such as sex, ethnicity and indicators of socio-economic status were explored. The workshop also explored the ability to have inbuilt 'linkage' into the system (ie, where flagging and tracing of participants onto the NHS Spine could happen at the point of sampling). |
| Year(s) Of Engagement Activity | 2022 |
| 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 | UK Biobank Cohort |
| 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 | Provided expert advice on linkage strategies for accessing non-health administrative records (DWP & HMRC data). |
| Year(s) Of Engagement Activity | 2022 |
| 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 |