Lucy Jane Griffiths
Current Organizations / Institutes
The organizations/institutes from the scholar's latest article
Lucy Jane Griffiths has a total of 300 co-authors. Here are the top co-authors by number of shared publications:
- Carol Dezateux
Life Course Epidemiology and Biostatistics, UCL Great Ormond Street Institute of Child Health, London, UK
31 shared publications - Ashley Akbari
Population Data Science, Swansea University Medical School, Swansea University, Swansea, UK
19 shared publications - Richard Fry
Population Data Science, Swansea University Medical School, Swansea University, Swansea, Wales, UK
12 shared publications Mario Cortina-Borja
Great Ormond Street Institute of Child Health, University College London, London, UK
11 shared publications- Ronan Anthony Lyons
Population Data Science, Swansea University Medical School, Swansea, UK
11 shared publications - Francesco Sera
Department of Statistics, Computer Science and Applications "G. Parenti", University of Florence, Florence, Italy
10 shared publications
Latest Publications
- Open Access
- 1 October 2026
- Published by BMJ in BMJ Public Health
- Vol. 4 (4) , e004632
Fertility trends and selective fertility in Wales during the COVID-19 pandemic: a population-level time series analysis
- 1 October 2026
- Published by BMJ in BMJ Public Health
- Vol. 4 (4) , e004632
Open AccessFertility trends and selective fertility in Wales during the COVID-19 pandemic: a population-level time series analysis
- 1 October 2026
- Published by Bristol University Press in Longitudinal and Life Course Studies
- Vol. 17 (4) , 527-550
Characterising residential mobility during childhood in the United Kingdom: a longitudinal study using linked electronic health records
Background: Childhood residential mobility (RM) has been associated with adverse health and social outcomes. We examined differences in RM by family size and household composition in two diverse, disadvantaged UK populations. Methods: Using electronic health records (EHRs) and anonymised addresses, we examined if household characteristics are associated with RM in north-east London (NEL) and Wales. We conducted a longitudinal study of 240,509 (51.0 per cent male) and 398,959 (51.3 per cent male) children aged 0–13 years in NEL and Wales respectively on 1 January 2015, with complete follow-up until 31 December 2019. We defined RM as at least one change in address during follow-up. We estimated odds ratios (OR) and 95 per cent confidence intervals (CI) for RM by interactions between age group (0–4, 5–9, 10–13 years), number of children in household and household composition, adjusting for demographic, household and area-level characteristics. Results: Overall, 20.6 per cent and 32.1 per cent of children experienced RM. RM was highest in the youngest age group: NEL: 25.3 per cent, 18.7 per cent, 15.6 per cent; Wales: 40.1 per cent, 29.4 per cent, 23.6 per cent. RM was more likely among 10–13-year-olds living with a single adult than two working-age adults (NEL OR: 1.15; 95 per cent CI: 1.07,1.25; Wales: 1.82; 1.73,1.91). Children in households with four or more children were more likely to experience RM than those with no other child among 10–13-year-olds in NEL (1.31; 1.18,1.46) and 5–9-year-olds and 10–13-year-olds in Wales (1.21; 1.14,1.29 and 1.68; 1.56,1.82). Conclusion: RM is more common in early childhood and varies by household composition, region and age group. EHRs can be used to estimate RM using real-world data and have the potential to examine its impact on health and other outcomes.
- 1 October 2026
- Published by Bristol University Press in Longitudinal and Life Course Studies
- Vol. 17 (4) , 527-550
Characterising residential mobility during childhood in the United Kingdom: a longitudinal study using linked electronic health records
Background: Childhood residential mobility (RM) has been associated with adverse health and social outcomes. We examined differences in RM by family size and household composition in two diverse, disadvantaged UK populations. Methods: Using electronic health records (EHRs) and anonymised addresses, we examined if household characteristics are associated with RM in north-east London (NEL) and Wales. We conducted a longitudinal study of 240,509 (51.0 per cent male) and 398,959 (51.3 per cent male) children aged 0–13 years in NEL and Wales respectively on 1 January 2015, with complete follow-up until 31 December 2019. We defined RM as at least one change in address during follow-up. We estimated odds ratios (OR) and 95 per cent confidence intervals (CI) for RM by interactions between age group (0–4, 5–9, 10–13 years), number of children in household and household composition, adjusting for demographic, household and area-level characteristics. Results: Overall, 20.6 per cent and 32.1 per cent of children experienced RM. RM was highest in the youngest age group: NEL: 25.3 per cent, 18.7 per cent, 15.6 per cent; Wales: 40.1 per cent, 29.4 per cent, 23.6 per cent. RM was more likely among 10–13-year-olds living with a single adult than two working-age adults (NEL OR: 1.15; 95 per cent CI: 1.07,1.25; Wales: 1.82; 1.73,1.91). Children in households with four or more children were more likely to experience RM than those with no other child among 10–13-year-olds in NEL (1.31; 1.18,1.46) and 5–9-year-olds and 10–13-year-olds in Wales (1.21; 1.14,1.29 and 1.68; 1.56,1.82). Conclusion: RM is more common in early childhood and varies by household composition, region and age group. EHRs can be used to estimate RM using real-world data and have the potential to examine its impact on health and other outcomes.
- Open Access
- 18 August 2026
- Published by Oxford University Press (OUP) in International Journal of Epidemiology
- Vol. 55 (5)
Data Resource Profile: Children in Wales: The Cohort for Health and Wellbeing Inequality (CWTCH)
- 18 August 2026
- Published by Oxford University Press (OUP) in International Journal of Epidemiology
- Vol. 55 (5)
Open AccessData Resource Profile: Children in Wales: The Cohort for Health and Wellbeing Inequality (CWTCH)
- Open Access
- 26 June 2026
- Published by F1000 Research Ltd in Wellcome Open Research
- Vol. 11, 388
Maternal And preGnancy hEalth aNd elevaTed heAt (MAGENTA): protocol for a novel data linkage study exploring the association between temperature and pregnancy outcomes in Wales and London, UK
There is growing evidence on the adverse health impacts of global warming, particularly amongst more vulnerable populations such as pregnant women and their newborns. However, evidence on the impacts of heat on maternal and neonatal health in the UK remains limited. The MAGENTA project aims to close this gap by assessing the effects, modifiers, and biological mechanisms of heat exposure during pregnancy in Wales and London. To examine the relationship between heat during pregnancy and pregnancy outcomes in the UK, MAGENTA will conduct a retrospective data linkage and cohort study in Wales and London, alongside a prospective bio-sampling study with a consented cohort of pregnant women in Swansea, UK. Daily, household-level temperatures during pregnancy will be linked to women’s electronic health records in the Secure Anonymised Information Linkage (SAIL) databank in Wales and the Kids’ Environment and Health Cohort (KEHC) within ONS Secure Research Service (ONS) in London. In Swansea, UK, biological samples and personal monitoring measures will be collected from participants before, during and after a local heatwave and at equivalent gestations in cooler months, to explore responses to heat in pregnancy. All pregnancies resulting in a live birth or stillbirth (≥24 weeks) in Wales or London from 2010 to 2023 will be included. The association between elevated or prolonged heat during pregnancy and the following outcomes will be explored: gestational age, birth weight, stillbirth, maternal length of stay and neonatal mortality. Future impact of global warming on pregnancy outcomes and health resource use will be projected using Bayesian models informed by the Intergovernmental Panel on Climate Change scenarios. MAGENTA will provide the most comprehensive evidence to date on the potential effects of heat on pregnancy in the UK, to inform policies and interventions designed to protect future maternal and neonatal health in a warming world.
- 26 June 2026
- Published by F1000 Research Ltd in Wellcome Open Research
- Vol. 11, 388
Open AccessMaternal And preGnancy hEalth aNd elevaTed heAt (MAGENTA): protocol for a novel data linkage study exploring the association between temperature and pregnancy outcomes in Wales and London, UK
There is growing evidence on the adverse health impacts of global warming, particularly amongst more vulnerable populations such as pregnant women and their newborns. However, evidence on the impacts of heat on maternal and neonatal health in the UK remains limited. The MAGENTA project aims to close this gap by assessing the effects, modifiers, and biological mechanisms of heat exposure during pregnancy in Wales and London. To examine the relationship between heat during pregnancy and pregnancy outcomes in the UK, MAGENTA will conduct a retrospective data linkage and cohort study in Wales and London, alongside a prospective bio-sampling study with a consented cohort of pregnant women in Swansea, UK. Daily, household-level temperatures during pregnancy will be linked to women’s electronic health records in the Secure Anonymised Information Linkage (SAIL) databank in Wales and the Kids’ Environment and Health Cohort (KEHC) within ONS Secure Research Service (ONS) in London. In Swansea, UK, biological samples and personal monitoring measures will be collected from participants before, during and after a local heatwave and at equivalent gestations in cooler months, to explore responses to heat in pregnancy. All pregnancies resulting in a live birth or stillbirth (≥24 weeks) in Wales or London from 2010 to 2023 will be included. The association between elevated or prolonged heat during pregnancy and the following outcomes will be explored: gestational age, birth weight, stillbirth, maternal length of stay and neonatal mortality. Future impact of global warming on pregnancy outcomes and health resource use will be projected using Bayesian models informed by the Intergovernmental Panel on Climate Change scenarios. MAGENTA will provide the most comprehensive evidence to date on the potential effects of heat on pregnancy in the UK, to inform policies and interventions designed to protect future maternal and neonatal health in a warming world.
- Open Access
- 14 April 2026
- Published by Wiley in British Educational Research Journal
- Vol. 52 (5) , 3610-3634
Educational pathways and outcomes for care‐experienced children: A 16‐year longitudinal study
Children who are removed from their birth families during childhood—termed care‐experienced—can be at risk for lower educational attainment and poorer school experiences, often linked to deprivation and behavioural factors. However, research often uses aggregated measures that obscure the complexities of care (e.g. timing, and placements) and evidence is needed to understand the factors that could explain the link between care‐experience and attainment. We used anonymised, individual‐level, population‐scale linked data from the Secure Anonymised Information Linkage Databank, covering children born in Wales between 2000 and 2003. Children were followed until their examinations at age 10/11 and 15/16 to assess attainment. To capture the complexity of care experiences, we conducted latent class analysis to identify distinct care profiles. Using a three‐step approach, we estimated the association between these profiles and attainment at age 10/11. To explore the pathways to attainment, we applied causal mediation analysis to assess how school‐related factors—school moves, free school meals, and suspension or exclusion—mediated the relationship between the care profiles and their attainment at age 15/16. We identified seven care‐experience profiles. Children who were adopted had the highest attainment, while those entering foster care later had the lowest. School‐related factors explained some of the lower attainment among children with short, early care who returned home. These findings highlight the complexity of care experiences and their association with attainment. We advocate for improved support in Wales, including implementing the Virtual School Model and broader definitions to ensure inclusive support for children who may be hidden to schools.
- 14 April 2026
- Published by Wiley in British Educational Research Journal
- Vol. 52 (5) , 3610-3634
Open AccessEducational pathways and outcomes for care‐experienced children: A 16‐year longitudinal study
Children who are removed from their birth families during childhood—termed care‐experienced—can be at risk for lower educational attainment and poorer school experiences, often linked to deprivation and behavioural factors. However, research often uses aggregated measures that obscure the complexities of care (e.g. timing, and placements) and evidence is needed to understand the factors that could explain the link between care‐experience and attainment. We used anonymised, individual‐level, population‐scale linked data from the Secure Anonymised Information Linkage Databank, covering children born in Wales between 2000 and 2003. Children were followed until their examinations at age 10/11 and 15/16 to assess attainment. To capture the complexity of care experiences, we conducted latent class analysis to identify distinct care profiles. Using a three‐step approach, we estimated the association between these profiles and attainment at age 10/11. To explore the pathways to attainment, we applied causal mediation analysis to assess how school‐related factors—school moves, free school meals, and suspension or exclusion—mediated the relationship between the care profiles and their attainment at age 15/16. We identified seven care‐experience profiles. Children who were adopted had the highest attainment, while those entering foster care later had the lowest. School‐related factors explained some of the lower attainment among children with short, early care who returned home. These findings highlight the complexity of care experiences and their association with attainment. We advocate for improved support in Wales, including implementing the Virtual School Model and broader definitions to ensure inclusive support for children who may be hidden to schools.
- Open Access
- 31 March 2026
- Published by Center for Open Science in SocArXiv
Full report: Scoping the feasibility of a new longitudinal birth cohort study of children at risk of poor outcomes across the UK
This project explored the feasibility of establishing a new UK-wide longitudinal birthcohort study focused on children at risk of poor outcomes, particularly those likely tobecome involved with early interventions or children’s social care services.The project found a strong policy appetite and clear research need for a newlongitudinal birth cohort study, capturing lifelong experiences of children at risk.Although challenging, the findings lead to three main study designs: enhancedrecruitment of mothers (including those living in disadvantaged circumstances)whose children may be at greater risk, as part of a population-wide study;recruitment based on maternal health records to recruit mothers with recordedadversities within a defined period pre-birth; or a targeted study capturing childrenalready involved in children’s social care. We detail sample size estimations and costconsiderations. We also outline an alternative or complementary strategy throughlinkage to administrative records.This report includes findings in full - including methodology, all data tables, anddiscussion. A summary report is also available [CLS website link to be inserted].
- 31 March 2026
- Published by Center for Open Science in SocArXiv
Open AccessFull report: Scoping the feasibility of a new longitudinal birth cohort study of children at risk of poor outcomes across the UK
This project explored the feasibility of establishing a new UK-wide longitudinal birthcohort study focused on children at risk of poor outcomes, particularly those likely tobecome involved with early interventions or children’s social care services.The project found a strong policy appetite and clear research need for a newlongitudinal birth cohort study, capturing lifelong experiences of children at risk.Although challenging, the findings lead to three main study designs: enhancedrecruitment of mothers (including those living in disadvantaged circumstances)whose children may be at greater risk, as part of a population-wide study;recruitment based on maternal health records to recruit mothers with recordedadversities within a defined period pre-birth; or a targeted study capturing childrenalready involved in children’s social care. We detail sample size estimations and costconsiderations. We also outline an alternative or complementary strategy throughlinkage to administrative records.This report includes findings in full - including methodology, all data tables, anddiscussion. A summary report is also available [CLS website link to be inserted].
- Open Access
- 31 March 2026
- Published by Center for Open Science in SocArXiv
Summary report: Scoping the feasibility of a new longitudinal birth cohort study of children at risk of poor outcomes across the UK
This project explored the feasibility of establishing a new UK-wide longitudinal birth cohort study focused on enhanced recruitment and retention of vulnerable children at risk of poor outcomes, particularly those likely to become involved with early interventions or children’s social care services. The project found a strong policy appetite and clear research need for a new longitudinal birth cohort study, capturing lifelong experiences of children at risk. Although challenging (with the requirement for further governance and ethical considerations), the findings lead to three main study designs (recommendations): enhanced recruitment of mothers (including those living in disadvantaged circumstances) whose children may be at greater risk, as part of a populationwide study; recruitment based on maternal health records to recruit mothers with recorded adversities within a defined period pre-birth; or a targeted study capturing observations and outcomes of children already involved in children’s social care. We also outline an alternative or complementary strategy through linkage to administrative records. This report provides a brief, accessible overview of the main findings. Readers are encouraged to consult the main report [CLS website link to be inserted] for the findings in full including methodology, all data tables, and discussion. The project was funded by the Economic and Social Research Council (ESRC) under the Transforming Data Collections Infrastructure for Social Science initiative (Grant No. UKRI109). It brought together an interdisciplinary UK-wide team from Swansea University, University College London, Ulster University, Cardiff University and the National Centre for Social Research, supported by the Nuffield Family Justice Observatory.
- 31 March 2026
- Published by Center for Open Science in SocArXiv
Open AccessSummary report: Scoping the feasibility of a new longitudinal birth cohort study of children at risk of poor outcomes across the UK
This project explored the feasibility of establishing a new UK-wide longitudinal birth cohort study focused on enhanced recruitment and retention of vulnerable children at risk of poor outcomes, particularly those likely to become involved with early interventions or children’s social care services. The project found a strong policy appetite and clear research need for a new longitudinal birth cohort study, capturing lifelong experiences of children at risk. Although challenging (with the requirement for further governance and ethical considerations), the findings lead to three main study designs (recommendations): enhanced recruitment of mothers (including those living in disadvantaged circumstances) whose children may be at greater risk, as part of a populationwide study; recruitment based on maternal health records to recruit mothers with recorded adversities within a defined period pre-birth; or a targeted study capturing observations and outcomes of children already involved in children’s social care. We also outline an alternative or complementary strategy through linkage to administrative records. This report provides a brief, accessible overview of the main findings. Readers are encouraged to consult the main report [CLS website link to be inserted] for the findings in full including methodology, all data tables, and discussion. The project was funded by the Economic and Social Research Council (ESRC) under the Transforming Data Collections Infrastructure for Social Science initiative (Grant No. UKRI109). It brought together an interdisciplinary UK-wide team from Swansea University, University College London, Ulster University, Cardiff University and the National Centre for Social Research, supported by the Nuffield Family Justice Observatory.
- Open Access
- 27 February 2026
- Published by Royal College of Psychiatrists in BJPsych Open
- Vol. 12 (2) , e75
Self-harm in children involved in private and public family justice court proceedings: longitudinal national data linkage study
Background: Little is known about self-harm in children involved in family justice proceedings, particularly in private family courts in England and Wales. Aims: To examine records of self-harm in children involved in private and public law proceedings using population-level linked data. Method: A retrospective e-cohort study of children aged under 18 years, using linked health and family justice (Cafcass Cymru) data (2011–2018). Family court involvement was recorded from age 0 to 17 years. Incidence of self-harm was recorded from age 10 to 17 years to fit with the standard definition of self-harm. Annual incidence of self-harm over time across general practitioner (GP), emergency department and hospital admissions for individual children in private and public law proceedings were compared with a non-court cohort using Poisson regression. Self-harm following court proceedings was compared with an age- and gender-matched non-court cohort using Cox regression. Results: Adjusted self-harm rates were higher in court-involved children than the non-court cohort (incident rate ratios (IRRs) (95% CI), private: GP 1.8 (1.6–2.1); emergency department 1.4 (1.2–1.7); admissions 1.8 (1.5–2.1); public: GP 4.6 (4.1–5.3); emergency department 5.0 (4.3–5.8); admissions 5.0 (4.3–5.8)). Compared with matched comparison children, risk of self-harm was higher following private (adjusted hazard ratios 2.0 (1.7–2.2)) and public court proceedings (hazard ratio 2.3 (2.7–3.8)). Hazard ratios were greater for those from less deprived areas and those with no history of self-harm. Conclusions: The elevated risk of self-harm in children involved in public law proceedings is well recognised. Our study highlights risk in children in private family justice proceedings. Elevated risk among those from less deprived areas and those with no history of self-harm may reflect circumstances associated with family justice involvement, resulting in rates comparable to children with other pre-existing vulnerabilities. Contact with family justice is an opportunity to offer preventative support.
- 27 February 2026
- Published by Royal College of Psychiatrists in BJPsych Open
- Vol. 12 (2) , e75
Open AccessSelf-harm in children involved in private and public family justice court proceedings: longitudinal national data linkage study
Background: Little is known about self-harm in children involved in family justice proceedings, particularly in private family courts in England and Wales. Aims: To examine records of self-harm in children involved in private and public law proceedings using population-level linked data. Method: A retrospective e-cohort study of children aged under 18 years, using linked health and family justice (Cafcass Cymru) data (2011–2018). Family court involvement was recorded from age 0 to 17 years. Incidence of self-harm was recorded from age 10 to 17 years to fit with the standard definition of self-harm. Annual incidence of self-harm over time across general practitioner (GP), emergency department and hospital admissions for individual children in private and public law proceedings were compared with a non-court cohort using Poisson regression. Self-harm following court proceedings was compared with an age- and gender-matched non-court cohort using Cox regression. Results: Adjusted self-harm rates were higher in court-involved children than the non-court cohort (incident rate ratios (IRRs) (95% CI), private: GP 1.8 (1.6–2.1); emergency department 1.4 (1.2–1.7); admissions 1.8 (1.5–2.1); public: GP 4.6 (4.1–5.3); emergency department 5.0 (4.3–5.8); admissions 5.0 (4.3–5.8)). Compared with matched comparison children, risk of self-harm was higher following private (adjusted hazard ratios 2.0 (1.7–2.2)) and public court proceedings (hazard ratio 2.3 (2.7–3.8)). Hazard ratios were greater for those from less deprived areas and those with no history of self-harm. Conclusions: The elevated risk of self-harm in children involved in public law proceedings is well recognised. Our study highlights risk in children in private family justice proceedings. Elevated risk among those from less deprived areas and those with no history of self-harm may reflect circumstances associated with family justice involvement, resulting in rates comparable to children with other pre-existing vulnerabilities. Contact with family justice is an opportunity to offer preventative support.
- Open Access
- 14 January 2026
- Published by Swansea University in International Journal of Population Data Science
- Vol. 11 (1)
Exploring Loneliness and Living Alone Through Linked Administrative and Survey Data in Wales, UK
BackgroundLoneliness is a public health priority, yet population-scale evidence that distinguishes types of loneliness and links with living alone circumstances is scarce. Population-wide linked administrative data within the Secure Anonymised Information Linkage (SAIL) Databank provide an opportunity to investigate these relationships across Wales. Objectives(1) Describe long-term living alone trends; (2) develop indicators for reason for living alone; and (3) examine associations between living alone (including derived indicators) and emotional, social and overall loneliness, alongside demographic, health and place-based factors. MethodsWe conducted a two-phase observational study in Wales. Phase 1 used annual, population level snapshots (2008--2024) to quantify living alone trends and correlates. Phase 2 linked individual level data in SAIL to National Survey for Wales loneliness data (De Jong Gierveld 6-item) to model adjusted associations. We inferred living alone reasons (partner loss, separation, unassigned) from life events data. Models adjusted for age and gender interaction, health, tenure, housing type, deprivation, and built environment indicators. ResultsLiving alone households increased from 27.0% (314,806) in 2008 to 29.6% (363,133) in 2024. In adjusted models, living alone was strongly associated with loneliness risk, especially emotional loneliness. These associations were modified by reason for living alone, with the largest effects observed following recent partner loss. Younger adults reported highest overall loneliness; men showed higher social loneliness around midlife; women showed higher emotional loneliness. Built environment measures showed little evidence of independent association after adjustment. ConclusionsPopulation-scale linkage can generate robust, policy-relevant indicators of living alone dynamics. Such indicators support monitoring and targeting within health and social care, complementing national statistics and enabling future linked data studies.
- 14 January 2026
- Published by Swansea University in International Journal of Population Data Science
- Vol. 11 (1)
Open AccessExploring Loneliness and Living Alone Through Linked Administrative and Survey Data in Wales, UK
BackgroundLoneliness is a public health priority, yet population-scale evidence that distinguishes types of loneliness and links with living alone circumstances is scarce. Population-wide linked administrative data within the Secure Anonymised Information Linkage (SAIL) Databank provide an opportunity to investigate these relationships across Wales. Objectives(1) Describe long-term living alone trends; (2) develop indicators for reason for living alone; and (3) examine associations between living alone (including derived indicators) and emotional, social and overall loneliness, alongside demographic, health and place-based factors. MethodsWe conducted a two-phase observational study in Wales. Phase 1 used annual, population level snapshots (2008--2024) to quantify living alone trends and correlates. Phase 2 linked individual level data in SAIL to National Survey for Wales loneliness data (De Jong Gierveld 6-item) to model adjusted associations. We inferred living alone reasons (partner loss, separation, unassigned) from life events data. Models adjusted for age and gender interaction, health, tenure, housing type, deprivation, and built environment indicators. ResultsLiving alone households increased from 27.0% (314,806) in 2008 to 29.6% (363,133) in 2024. In adjusted models, living alone was strongly associated with loneliness risk, especially emotional loneliness. These associations were modified by reason for living alone, with the largest effects observed following recent partner loss. Younger adults reported highest overall loneliness; men showed higher social loneliness around midlife; women showed higher emotional loneliness. Built environment measures showed little evidence of independent association after adjustment. ConclusionsPopulation-scale linkage can generate robust, policy-relevant indicators of living alone dynamics. Such indicators support monitoring and targeting within health and social care, complementing national statistics and enabling future linked data studies.
- Open Access
- 14 January 2026
- Published by Swansea University in International Journal of Population Data Science
- Vol. 11 (1)
Developing resources to facilitate public conversations about the use of linked address-based data for research
IntroductionUnique Property Reference Numbers (UPRNs) provide every addressable location in the United Kingdom (UK) with an identifier up to 12-digits in length, which are persistently unique, and are a mandated standard across the public sector in the UK. This standardisation means they are suited to be pseudonymised for data linkage for research, innovation and public benefit. While there have been many consultations exploring public trust in, and attitudes to, using patient data for research, none have explicitly considered their use for address-based linkage using UPRNs. ObjectivesOur overarching aim is to build public trust in the uses of address-based data at household level. We set out to develop and test materials to facilitate conversations about the use of address-based data linkage at the household-level. In this case study, we describe the development of information materials and an initial dialogue to inform future public deliberation. MethodsIn collaboration with designers and researchers, we generated a prototype website and shared this with experienced public advisory groups. Feedback from these groups informed development of a suite of resources, including slides and a facilitator's script to guide workshop discussions. These were supplemented by interactive, tactile tools designed to promote understanding of key concepts, and to encourage participants to ask questions relevant to their interests and concerns. We hosted two workshops with residents in a multi-ethnic, disadvantaged inner city locality to test and refine these materials. ResultsDialogue with residents emphasised the importance of accessibility, including clear descriptions of technical jargon, and the effectiveness of using less text-heavy materials and more interactive formats, particularly for participants for whom English is not their first language. Visual representations of people included in workshop materials need to reflect diversity in age, gender, ethnicity, and mobility to ensure resources are relatable. Adapting the approach to delivering information - whether through digital or physical formats - proved crucial in engaging with participants and meeting their diverse needs. ConclusionsWe have created and tested with different public groups a toolkit to support conversations with academic and public audiences about research using address-linked patient data. The toolkit has been disseminated and made freely available for use by the research community.
- 14 January 2026
- Published by Swansea University in International Journal of Population Data Science
- Vol. 11 (1)
Open AccessDeveloping resources to facilitate public conversations about the use of linked address-based data for research
IntroductionUnique Property Reference Numbers (UPRNs) provide every addressable location in the United Kingdom (UK) with an identifier up to 12-digits in length, which are persistently unique, and are a mandated standard across the public sector in the UK. This standardisation means they are suited to be pseudonymised for data linkage for research, innovation and public benefit. While there have been many consultations exploring public trust in, and attitudes to, using patient data for research, none have explicitly considered their use for address-based linkage using UPRNs. ObjectivesOur overarching aim is to build public trust in the uses of address-based data at household level. We set out to develop and test materials to facilitate conversations about the use of address-based data linkage at the household-level. In this case study, we describe the development of information materials and an initial dialogue to inform future public deliberation. MethodsIn collaboration with designers and researchers, we generated a prototype website and shared this with experienced public advisory groups. Feedback from these groups informed development of a suite of resources, including slides and a facilitator's script to guide workshop discussions. These were supplemented by interactive, tactile tools designed to promote understanding of key concepts, and to encourage participants to ask questions relevant to their interests and concerns. We hosted two workshops with residents in a multi-ethnic, disadvantaged inner city locality to test and refine these materials. ResultsDialogue with residents emphasised the importance of accessibility, including clear descriptions of technical jargon, and the effectiveness of using less text-heavy materials and more interactive formats, particularly for participants for whom English is not their first language. Visual representations of people included in workshop materials need to reflect diversity in age, gender, ethnicity, and mobility to ensure resources are relatable. Adapting the approach to delivering information - whether through digital or physical formats - proved crucial in engaging with participants and meeting their diverse needs. ConclusionsWe have created and tested with different public groups a toolkit to support conversations with academic and public audiences about research using address-linked patient data. The toolkit has been disseminated and made freely available for use by the research community.