This Report has been produced by the Honest Broker Service, part of the HSC Business Services Organisation.
All queries can be forwarded to: HonestBrokerService@hscni.net
Further background information can be found here.
Previous year’s Annual Reports can be found here.
© Crown Copyright1a. Foreword
This has been another highly successful year for the Honest Broker Service (HBS), as the service continues to support a growing and increasingly diverse portfolio of research projects across Health and Social Care in Northern Ireland.
During 2025/26, ten new research project applications were considered by the HSC Data Access Committee with nine new research projects approved, bringing the total number of studies supported by HBS to well over 100, involving more than 260 researchers over the lifetime of the service. This sustained demand reflects the increasing importance of high-quality, linked data in informing policy, improving services, and ultimately delivering better outcomes for the population.
Secure remote access through the Secure e Research Platform (SeRP) continues to be a cornerstone of the service, enabling efficient and controlled access to data. During the year, 65 researchers accessed data across 46 active projects. While the number of active projects on SeRP decreased slightly compared to the previous year, due to projects finishing, the increase in active users demonstrates continued engagement with, and confidence in, the remote access model.
Research activity during the year covered a broad range of policy- and service-relevant topics, including mental health, childhood vaccination uptake, end of life care, congenital heart disease, social work, neighbourhood renewal, kidney disease and complex disease comorbidity research. Mental health remains a particularly prominent area within the HBS portfolio, reflecting ongoing demand for robust evidence to support service planning, prevention and intervention.
The research in focus section of this report highlights several studies facilitated through the HBS who have produced impactful findings this year including work linking homelessness to experiences of leaving care which gained significant attention from MLA’s.
The number of research outputs checked and safely released remained high, with over 800 outputs cleared during the year the year, the majority through SeRP, with clearance targets consistently achieved.
Alongside research activity, HBS supported five new service evaluation projects approved during 2025/26, all supporting the Department of Health. This brings the total number of non research projects delivered through HBS to 71, demonstrating the wider value of the service in supporting operational analysis, evaluation and evidence-based decision-making across the system.
The service has also continued to support key national assets, including major registries and the Northern Ireland Longitudinal Study (NILS), providing regular data updates and complex linkages that enable long-term, population-level research for public benefit.
In addition to business-as-usual delivery, 2025/26 has been an important year of development and preparation for the future, in particularly working alongside the HSC Data Institute and Northern Ireland Trusted Research Environment (NITRE) leads on work packages to improve service offerings.
Looking ahead, HBS will continue to build on these foundations, supporting innovative data use while maintaining the highest standards of governance, security and public trust.
Professor Aaron Peace
Chair of HSC DAC
Consultant Cardiologist WHSCT
Chief Executive of the Clinical Translational Research and Innovation
Centre (C-TRIC)
1b. Key Updates
During 2025/26, the Honest Broker Service (HBS), working closely with the Northern Ireland Trusted Research Environment (NITRE) and the HSC Data Institute, has made significant progress in strengthening the data and research infrastructure across Northern Ireland. These developments are enhancing the availability, quality and usability of data for both research and service improvement.
NITRE delivers a portfolio of coordinated work packages, including:
• Trusted Research Environment Infrastructure (e.g. co-ordinating developments for the Honest Broker Service, platforms like the Secure e-Research Platform and Northern Ireland Health Analytics Platform)
• Cohort discovery – better ways of identifying patient cohorts for research including clinical trials
• Working on new governance pathways for research
• Business models and costing
• Integration of primary care and secondary care through permissions to link data from the General Practice Intelligence Platform
• Consented data services
General Practice Information Platform (GPIP) and Primary Care Data
Since 2018, Primary Care data has been provided from practices across Northern Ireland to the General Practitioner Intelligence Platform (GPIP).
With the agreement of each individual GP Practice, coded data from GP clinical systems is extracted on a regular basis and collated in a Regional Data Warehouse, hosted by the HSC Business Services Organisation.
The project is supported by the Data Institute within the Department of Health Digital Health and Care Northern Ireland (DHCNI) directorate.
Secure regional processing of GP data allows data scientists and business intelligence analysts within the Data Institute to support GP practices with analysis of data.
The data from GPIP is used to provide information and intelligence back to our GP practices to support improvements in their care services.
A key milestone during the year has been progress in enabling access to primary care data through the General Practice Information Platform (GPIP). This has included securing approval from the GPIP Editorial Board to make disease registry data derived from primary care available for research purposes through the Honest Broker Service.
This work was carried out as a NITRE work package and involved collaboration with the Data Institute GPIP Analytics team, the Honest Broker Service and the NITRE team in the Data Institute.
This work has been supported by targeted public engagement activity and outreach to GP stakeholders, helping to build confidence in the use of primary care data for research. In parallel, work has progressed on the development of GPIP metadata, improving the discoverability and understanding of available datasets. The metadata for the first two disease registries (Diabetes and Dementia) is now published on the Health Data Research Innovation Gateway and work is ongoing on producing metadata for Chronic Kidney Disease and Cardiovascular Disease registers.
SAPPHIRE
The Safe Access to Patient Data for Public Health, Intelligence, Research and Evaluation (SAPPHIRE) project aims to create a set of pseudonymised, well-documented, high-quality, data tables that enable analysis of patient journeys across multiple care settings.
It has been established in response to DoH Ministerial Priorities to enable increased analysis of winter pressures and to inform the new neighbourhood care model.
Extracts from systems including the new encompass electronic health record system which has been implemented across NI HSC Trusts are being produced and held in pseudonymised format on the Northern Ireland Health Analytics Platform.
Access to the data on NIHAP will be managed by the HSC Data Institute on behalf of controllers and Honest Broker Service and agreement has been sought from data controllers that SAPPHIRE data can be utilised via the Honest Broker Service for research with application via the HSC Data Access Committee.
It is hoped that variables held in SAPPHIRE will cover many of the needs of the Honest Broker Service research community and will enable longitudinal analysis of pre-encompass rollout data and encompass data.
Public Engagement and the Northern Ireland Public Data Panel
An important development during 2025/26 has been the continued success of the Northern Ireland Public Data Panel as a forum for bringing informed public perspectives into the use of data for research, service improvement and policymaking.
During the year, the Panel published its first summary report on public perspectives on the use of Northern Ireland Health and Social Care data, held a Data Dialogue on using data to measure and map poverty and food insecurity in Northern Ireland, and contributed to further dialogues on the future data strategy of the Northern Ireland Biobank and on EquiPlace, a proposal focused on trusted linkage of housing, transport and environmental data to address health inequalities.
The Panel also opened applications for future dialogues from organisations across sectors, reflecting its growing role in the wider Northern Ireland data ecosystem. Together, these activities demonstrate the increasing value of the Panel in supporting transparency, public trust and the embedding of public values in the development of new data initiatives.
Health Data Research Service (HDRS) Readiness
Significant work has also been undertaken to prepare for participation in the emerging UK-wide Health Data Research Service.
This new service supported by UK Government and Wellcome aims to create a single secure gateway to health and care data for research, including supporting clinical trials.
NITRE and HBS have been involved in early engagement with partners across the devolved nations, alongside internal readiness work to align governance, operational processes and technical capabilities with anticipated requirements.
This preparatory work will ensure that Northern Ireland is well positioned to contribute to, and benefit from, a coordinated UK approach to health data research, including opportunities for federated analysis and cross-jurisdictional collaboration.
Generation New Era
Work is underway for the launch of the Generation New Era study in Northern Ireland.
Generation New Era is a ground-breaking scientific study of around 30,000 babies born in 2026, and their families. It’s the first UK-wide study of its kind in 25 years, and the largest ever.
The study aims to follow the babies as they grow up in our changing world. By providing vital new insights into children’s health and development, Generation New Era will help researchers, governments and service providers to improve the lives of children and families in the UK.
The study aims to include babies born over a whole year, between January and December 2026 — a total of around 30,000 families.
Families will be chosen to reflect the diversity within each region and country, and across the UK as a whole.
Families will be chosen at random from records of births held by government departments and agencies and will receive an invitation to take part.
In Northern Ireland the HSC Business Services Organisation has been commissioned by the Department of Health to assist with the recruitment process and the Honest Broker Service and Family Practitioner Service are helping to facilitate sampling and contact with families on behalf of the Department and HSC Trusts.
More information about the study can be found here: About the study - Generation New Era
2. Introduction
Background
Patient and service user data is critical for improving Health and Social Care in Northern Ireland (HSC) services, whether for individual care or for improving population health, planning, innovation and research.
However, concerns about privacy are significant when we talk about using our personal medical data and the health service has to have robust legal, privacy and security controls in place at all times.
The layers of governance processes as well as the general complexity of the health service systems and data can be intimidating for researchers or analysts wishing to access data.
The Honest Broker Service (HBS) was established in 2014, to allow anonymised HSC data to be shared or accessed safely in order to maximise the uses and benefits which can be gained from it to the health service and population of Northern Ireland.
The Honest Broker Service acts as the regional Secure Data Environment (SDE) for Health and Social Care in Northern Ireland.
Also commonly referred to as a Trusted Research Environment or Data Safe Haven, a Secure Data Environment is a highly secure computing environment where accredited researchers can access data which has been anonymised to protect confidentiality.
The HBS operates under the 5 Safes Framework which is a globally recognised set of principles operated by similar secure data research services.
In addition to providing access to data for research, the HBS also provides anonymised, data to Department of Health (DoH) and HSC organisations to support a range of purposes including clinical audit and service evaluation.
Governance
- A Memorandum of Understanding has been established between all HSC Northern Ireland Organisations which outlines how the HBS operates, and it is currently under review.
- The HSC Business Services Organisation is the responsible organisation for the delivery of the Honest Broker Service, and hosts the HSC Regional Data Warehouse
- The Honest Broker Service Data Access Committee (DAC) are responsible for scrutiny of applications and oversight of the service. This Committee is representative of the HSC organisations who are signatories to the Memorandum of Understanding. The Terms of Reference for this Committee are published here and 2025/26 membership of the DAC is detailed in Appendix 1
- The Northern Ireland Trusted Research Environment (NITRE) Strategic Board provides strategic direction, support and investment, developing HSC infrastructure to enable utility of HSC data assets for evaluation and research, within safeguards of best practice. It acts as a commissioner and funder of the HBS.
Further detail on the services provided, processes, data uses and how to apply to access the service are available on the HBS website.
3. Research Activity
The HSC DAC reviewed 10 new research applications in 2025/26, and 9 of these new HBS research projects were approved in 2025/26. Summaries for each project can be viewed by clicking the links in the table below.
QUB - Queen’s University of Belfast
UU - Ulster University
HDRUK - Health Data Research UK
As in previous years, research projects approved this year cover a wide range of topics. This word cloud provides a brief summary of the areas covered by all research projects to date. Mental Health, Prescribing and Dementia are, overall, the 3 most popular areas of research.
Mental health remains one of the most popular areas of research in the HBS, with a further project approved in 2025/26 that has a focus on mental health. This project aims to investigate if antenatal factors influence susceptibility to mental ill-health in those exposed to early life adversity. This is part of a comprehensive investigation into mental ill-health & self-harm in Northern Ireland (NI).
2 distinct linkage projects were approved in 2025/26. These require datasets external to the HSC to be linked to datasets within the Regional Data Warehouse. Both projects required linkage based on patient Health Care Number, and as such required an additional data access agreement to be written and signed by the relevant parties to allow data transfer to proceed.
The other projects approved cover areas such as end of life care, social work turnover, childhood vaccinations, congenital heart disease in children, neighbourhood renewal programmes, kidney disease and complex diseases.
A list of journal articles published in 2025/26 relating to Honest Broker Service research projects can be found in Appendix 5.
Datasets Used
The vast majority of projects analyse a range of linked datasets held by BSO and the Regional Data Warehouse.
The Primary care datasets held by the BSO Family Practitioner Services Information Unit are shown in green. The graph below shows the most commonly used datasets. The most commonly used dataset National Health Application and Infrastructure Services (NHAIS) is the GP Registrations data. GP registrations are often used as the basis of research projects. The Central Postcode Directory (CPD) dataset has been shown with the NHAIS data as it is used in conjunction with the NHAIS data to assign various variables such as the Northern Ireland Multiple Deprivation Measure based on the patient postcode at specific time points in the NHAIS data. In 2025/26, 8 of the 9 projects approved requested access to NHAIS / CPD data.
The Enhanced Prescribing Database (EPD) is the next most commonly used dataset, it has been used by 75 projects since the inception of HBS. In 2025/26, 5 of the 9 approved projects requested access to EPD data. General Register Office (GRO) death data continues to be requested with 55 projects using it to date.
The Regional Data Warehouse hold the Secondary Care Datasets (shown in blue). The Patient Administration System (PAS) is the most commonly requested of these datasets, and has been used by 59 projects to date. The Northern Ireland Maternity Service (NIMATS) dataset is the second most commonly requested dataset from the Regional Data Warehouse, being utilised by 30 projects (3 projects requested this dataset in 2025/26). CaPPS (Cancer Patient Pathway System), and Outpatient datasets are less commonly requested. COVID-19 related datasets (introduced in 2020/21), including Pillar 1 and Pillar 2 COVID-19 testing and Vaccine Management System data continue to be requested regularly.
Secure e-Research Platform
| Year End | All SeRP Projects | Active Projects 2025/26 | Active Users 25/26 | Average No. Projects Per User |
|---|---|---|---|---|
| 2025/26 | 72 | 46 | 65 | 1.41 |
46 Projects operated under remote access via the Secure e-Research Platform (SeRP) during the course of the year, compared to 55 in 2024/25. Depsite the decrease in project numbers on SeRP, there was an increase in the number of active users at the end of the financial year with 65 researchers named as active users compared to 60 in 2024/25. The increase in active users demonstrates continued engagement with, and confidence in, the remote access model.
The majority of users (63%) were working on a single project, 17% working on 2 projects, and the remaining 20% working on between 3 and 8 projects. There were only 4 projects active in the Safe Haven, however, the Safe Haven remains an essential part of HBS because some of the more sensitive projects utilise data which is not permitted to be uploaded to the remote platform.
Output Requests
812 files were checked by HBS in 2025/26:
- 30 Intermediate files
- 186 final files
- 596 SeRP files
This is a slight decrease from 2024/25. The majority of files continue to be submitted via SeRP with 73% of files checked in 2025/26 submitted via SeRP. February was the busiest month with regards to output checking, with 116 files submitted for clearance. Intermediate outputs, contain the SeRP and Safe Haven outputs.
40% of the files were checked and returned to the researchers the same day they were submitted. 34% of the files were returned within one day of submission and the remainder took two or more days. Current guidelines state that intermediate outputs should be cleared within 5 working days, and final outputs within 20 days. This target was met in all cases where clarification was not sought.
Project Modifications
Project modifications form a significant part of the HBS workload every year. They can include:
- Research team personnel changes.
- Addition of new datasets to the existing project data.
- Addition of new variables from datasets already approved for use by the project team.
- Other changes to the originally approved project application.
All of these changes require a significant amount of work from the HBS team to implement , and can be vital to ensure a project can meet it’s desired objectives.
During this year, the HBS team received 36 project modification requests, compared to 63 last year. These included 11 requests to add additional team members, 17 requests to extend the project end date to allow analysis to continue beyond the planned end date, 5 requests to change project data, for additional datasets or variables to be added, or to extend the date range covered by the existing data provided to the team. These also included 2 requests to remove or change team members, and 1 requests to change the project aims.
| Modification Type | 2021/22 | 2022/23 | 2023/24 | 2024/25 | 2025/26 |
|---|---|---|---|---|---|
| Additional Dataset | 4 | 1 | 3 | ||
| Additional Research Question / Project Aims or Objectives | 1 | 1 | |||
| New Team Member | 5 | 18 | 6 | 15 | 11 |
| Additional Variable | 8 | 14 | 2 | 9 | 5 |
| Change Project Aims | 1 | 1 | |||
| Data Update | 7 | 3 | 2 | ||
| Project Extension | 2 | 12 | 27 | 35 | 17 |
| Un-archive Project Data | 1 | 1 | |||
| Remove/Change Team Member | 1 | ||||
| Total | 20 | 53 | 43 | 63 | 34 |
Registry Updates
The Honest Broker Service provide vital patient healthcare updates, including prescription data and General Registry Office Mortality Data to a number of organisations (including Queen’s University Belfast, QUB) who maintain important disease registries both in NI, and across the UK as a whole. These include the NI Cancer Registry (NICR) , the NI Cerebral Palsy Register (NICPR), the NI Cohort for the Longitudinal Study of Ageing (NICOLA), and the National Joint Registry (NJR).
More information is available here:
NILS
The Honest Broker Service has a dedicated statistician who works with the Northern Ireland Longitudinal Study (NILS) in the NI Statistics and Research Agency (NISRA), acting as both an advisor and data processor for distinct data linkage projects involving healthcare data.
The NILS is proportionally the largest longitudinal study in the UK covering 28% of the Northern Ireland population and accounting for approximately 50% of Northern Ireland households. The NILS ‘core’ data are drawn from the Health Card Registration data and then linked to data from Census returns (1981, 1991, 2001, 2011 and 2021), Vital Events (births, deaths and marriages), Migration and Property data. The result is over 40 years of longitudinal data which is regularly being updated. In addition to this rich resource the HBS supply further Health and Social Care data via Distinct Linkage Projects (DLPs) which undergo an approvals process involving input not only from both NILS and HBS statisticians, but other industry experts and academics. DLPs also require individual Data Access Agreements and Controller to Processor Agreements to be written and agreed between the data controllers (the Department of Health Strategic Planning and Performance Group – SPPG), NILS RSU and the BSO. Due to the nature of these projects, they are extremely complex and follow strict procedures ensuring patient confidentiality is protected at all times, and data is anonymised prior to being transferred to NILS.
There were 4 DLPs active in the NILS Secure Research Environment throughout the year. In 2025/26, 2 new DLPS were approved by the NILS Research Approvals Group, and are currently awaiting data controller approval. Details of all active and approved projects are available on the NILS Website.
The NILS 2021 database was formally launched as part of the UKLS conference in Queen’s University Belfast in April 2024. The NILS database now contains 2021 Census data thus extending research data coverage to 40 years and significantly enhancing the continued relevance and value of the NILS data for demographic, health and socio-economic research. It has been very well received by the research community, and 2 distinct data linkage projects have been approved to use the data so far.
NILS Projects Approved 2025/26
| Project | Title | Organisation | CI |
|---|---|---|---|
| NILS147 | Understanding trends and sociodemographic factors associated with childhood vaccination uptake in Northern Ireland: A national data linkage study | QUB | Dr Lynsey patterson |
| NILS653 | Associations between disability and education/employment outcomes in Cerebral Palsy: A data linkage study of the Northern Ireland Cerebral Palsy Register (NICPR) and NILS | QUB | Dr Oliver Perra |
4. Non-Research Activity
Requesting Organisations, Purpose & Themes
There were 5 new non-research projects approved in 2025/26, more than in 2024/25. 4 of these projects supported the Department of Health, with 1 supporting the Trusts, and they were composed of 5 service evaluation projects. These projects included updates, one focusing on patient level costing in the Health Service and one was to update the NI Health and Social Care Inequalities Monitoring system with up to date prescriptions data (relating to Anxiety, Antihypertensive drugs and Statins). There were also service evaluations of the Family Nurse Practitioner in Child Health Systems, a dental cost of service review and an MDT social work evaluation.
This brings the total number of non-research projects completed through the HBS to 71. As part of the wider transformation of Health and Social Care (HSC) services, the Health and Social Care Board (HSCB) closed on 31 March 2022 and responsibility for its functions transferred to the Department of Health as part of the Strategic Planning and Performance Group (SPPG). For purpose of this report, any projects undertaken as part of HSCB, SPPG or DoH are counted together.
47 non-research projects supported the DoH, 13 were for Health
Trusts, and 8 for the Public Health Agency. Over half of projects (40)
were for service evaluation, 14 for performance management, and 12 for
Clinical Audit. Topics covered (shown in this word cloud, right, have
focused mostly on areas including prescribing patterns, hospital
admissions and mortality rates.
Datasets Used
The dataset most commonly used by non-research projects in 2025/26 was the National Health Application and Infrastructure Services (NHAIS), which is the GP Registrations data. Enhanced Prescribing Database (EPD) was the most commonly requested in the previous two years. As a high proportion of research projects received by the Honest Broker Service involve the use of GP Registrations data to form study cohorts and/or analyse prescribing trends, this is expected.
Since the Honest Broker Service began in 2014, EPD has been used for 34 non-research projects and the Patient Administration System (PAS) has been used for 25 non-research projects. The A&E datasets (NIRAES / eEMS from the South & South Eastern Trusts, and Symphony from the Belfast, Northern & Western Trusts) are the third most commonly requested after these, being utilised by 11 projects in total.
5. Research in Focus
HBS Project E102: Evaluating the impact of Sure Start (Northern Ireland) using a naturally occurring experiment and a longitudinal birth cohort
A summary of the full briefing is provided below, but the whole whole brief can be accessed here.
Preventing health and education inequalities in early life can have a substantial impact on the well-being of children and families in Northern Ireland. For more than two decades, Sure Start has provided support and services to families with children under four in some of the most disadvantaged areas in Northern Ireland. This project measures the impact of being born in a Sure Start area on mothers and children’s health and interactions with children’s social care. We used linked administrative data on almost every child born in Northern Ireland and a ‘natural’ experiment (called Regression Discontinuity Design) to compare children born in identically disadvantaged areas with and without Sure Start.
Overall, we found that 18% of children would be referred to social services and 12% would become a ‘child in need’ before their fifth birthday. However, Sure Start children were 5.8 percentage points less likely to be referred to social services and 4.0 percentage points less likely to become a ‘child in need’. This is a substantial reduction in need for children’s social care equivalent to cutting social care caseloads in this age group by almost a third (e.g. hypothetically dropping from 18% to 11.2% for referrals). These effects are also much stronger for younger mothers.
Our findings on health were more nuanced with no strong evidence to suggest that Sure Start impacted a range of indicators such birthweight or breastfeeding rates. One limitation is that our study focussed on the first five years of life and there may be stronger impacts later on. For social care outcomes, the evidence is clear that Sure Start is an effective programme for tackling the effects of disadvantage on children and families. Without Sure Start, we believe that rates of social care interventions would noticeably higher in disadvantaged areas.
HBS Project 109: Exploring inpatient hospital and Accident & Emergency (A&E) department use in end-of-life care patients in Northern Ireland
Hospital and Ambulance Service Use by People in their Final Year of Life in Northern Ireland
Most people in their last year of life access the ambulance service, Emergency Departments (EDs), and hospitals as part of their care in Northern Ireland’s (NI’s) Health and Social Care (HSC) System. However, for many patients receiving End-of-Life (EoL) care for cancer, for example, the use of these services could be reduced if supportive palliative home care services were better developed. This study, funded by the Marie Curie charity, aimed to quantify the ambulance, ED and hospital use by patients in their last year of life. Data from EoL patients using ambulances from 2022-2024 was captured by the Northern Ireland Ambulance Service (NIAS). Data, on all patients in their last year of life who died in 2014-2023 attending EDs and admitted to hospital was captured, via the HSC Trusts, by the Honest Broker Service, and made available for the study via the UK Secure e-Research Platform (SeRP).
It is estimated that 19.9% of the NIAS emergency workload relates to people in their last year of life.Over half (58.3%) of people who interacted with NIAS were transferred to hospital by ambulance with 30.8% being referred or discharged by a NIAS clinician at scene, and 10.9% having died at scene.
Of the 161,375 people who died in NI from 2014-2023, eight in ten (81.6%) had at least one ED attendance in their last year of life. There was a total of 364,484 ED attendances among individuals in their last year of life, an average of 2.3 attendances per person. Over two thirds (68.2%) of patients arrived at ED by ambulance. The most common reason for attending ED was infection (20.6%). Two in three ED attendances (67.8%) resulted in emergency admission to a hospital ward.
Of the 161,375 people who died in NI from 2014-2023, 82.1% had at least one hospital admission in their last year of life.
There was a total of 607,034 hospital admissions among individuals in their last year of life, an average of 3.8 admissions per person. Of these admissions, 47.9% were elective day cases, while 46.0% were emergency admissions. The most common reasons for emergency admission were infection (30.2%), cancer/metastatic disease (10.3%), respiratory causes (9.2%), and cardiac causes (8.5%). Individuals had, on average, 1.7 emergency admissions in their last year of life. Long-stay emergency admissions (defined ≥24 hours) had an average length of 13.8 days.
Emergency and acute care for people in the final year of their life generated an estimated £1.74 billion in HSC System costs for people dying between 2014 and 2023. Hospital admissions dominated expenditure (85%), with ambulance (9%) and ED (6%) costs comprising a smaller share.
Expenditure was concentrated in prolonged emergency inpatient stays, demonstrating that system pressure and costs at the end of life are driven more by length of stay than by the high volume of short-stay (<24 hours) admissions, elective day case, or ED activity.
The study shows the potential for better supportive home-based palliative care in reducing the number of emergency admissions to hospitals and the associated beddays spent in hospitals. These reductions could translate into large savings for the HSC System, potentially defraying the investment costs for improving home-based palliative care in the first instance.
HBS Project 73: Identifying predictors and consequences of homelessness in Northern Ireland using linked homelessness, social services and health administrative data
Connecting Data, Changing Futures
What if we could identify the risk of youth homelessness years before it happens, and act early to prevent it?
An HBS project, delivered by researchers from Administrative Data Research Northern Ireland (ADR NI) and co-produced with care experienced young people, shows that this is possible. By securely linking longitudinal data across children’s social care, housing and health systems, researchers uncovered patterns that are often invisible within single services, revealing how early life experiences shape later outcomes.
What the research found
Homelessness among young people is not random or sudden - it is patterned and predictable. Over half (54.6%) of young people who presented as homeless had prior contact with children’s social care.
Care leavers face the greatest risk: nearly two-thirds experienced homelessness, with risk highest in the first two years after leaving care.
These findings show that risk is visible in the data, particularly at key transition points such as leaving care, signposting clear opportunities for earlier intervention.
Why it matters
This work demonstrates the power of linked administrative data to inform policy and improve lives. By connecting data across systems, we can identify vulnerability earlier, target support more effectively, and prevent crises rather than respond to them.
Launched at Stormont in March 2026, this research has already helped build the evidence base for the Northern Ireland Executive’s New Foundations Programme, supporting a more coordinated, preventative approach to youth homelessness.
The full report, Children’s Social Care and Homelessness in Northern Ireland: Connecting Data, Changing Futures, is available here:
Watch the accompanying animation, designed and narrated by care experienced young people here.
6. Non-Research in Focus
NELA
During the past financial year, the HBS supported the National Emergency Laparotomy Audit (NELA) by securely linking patient-level data across Northern Ireland. HBS facilitated the provision of mortality outcomes (30- and 90-day) by matching submitted patient cohorts with centrally held records. This enabled the production of robust, pseudonymised datasets for annual reporting while maintaining strict data governance standards. The service ensured timely, secure data flows to support quality improvement and benchmarking across Trusts.
GDS Cost of Service Evaluation
During the past financial year, the HBS supported a major service evaluation examining the cost of delivering General Dental Services in Northern Ireland. HBS Information Unit extracted, processed, and pseudonymised dental payment system data spanning multiple years to support robust analysis. Secure access to anonymised data was provided via the SeRP environment, ensuring compliance with data governance standards. This work enabled detailed assessment of dental service costs, supporting evidence-based planning and policy development.
7. HBS Activities in Focus
Statistical Disclosure Control Conference
As part of the Honest Broker Service’s ongoing commitment to maintaining the highest standards in data protection and safe data use, three members of the team attended a Statistical Disclosure Control (SDC) conference in Edinburgh during 2025/26. The event brought together data professionals from across the UK to explore both the theoretical foundations and practical application of Official Statistical Disclosure Control (OSDC). Sessions on the first day focused on reviewing core OSDC concepts, understanding key nuances, and applying these principles through practical exercises, including the assessment and clearance of test outputs. The emphasis on hands‑on learning supported deeper understanding of how disclosure risks can arise and how they can be effectively mitigated in real‑world data outputs.
The second and third days of the conference looked ahead, concentrating on how SDC and OSDC are taught and embedded within data services. Workshops explored redesigning training within the Safe Researcher Training (SRT) framework, identifying current and future training needs across different audiences, and considering the implications of emerging technologies such as artificial intelligence. Discussions also highlighted the role of accreditation, the evolving needs of output checkers, and the importance of developing proportionate, targeted training programmes. Attendance at the conference provided valuable insights that will help inform the development of HBS training, strengthen disclosure control practices, and ensure the service continues to support secure, ethical and high‑quality data access.
COGITO Fundamentals EPIC Training
In 2025/26, Rachel and Rory, members of the Honest Broker Service team, attended the COGITO Fundamentals EPIC training course as part of preparation for future access to Encompass data. Encompass is now live across all Northern Ireland Trusts, representing a major transformation in how health and care information is recorded and managed. Attendance at this training reflects HBS’s proactive approach to ensuring the necessary knowledge and skills are in place to support secure, ethical access to this new data source once appropriate governance arrangements are established.
The training provided an introduction to the EPIC system and its underlying data structures, helping staff to understand how clinical and administrative data are captured, stored and accessed within Encompass. Building this foundational knowledge is a key step in enabling HBS to adapt its processes and services in line with the changing data landscape in Northern Ireland. In time, this will support the expansion of HBS’s capability to facilitate safe, efficient and legally compliant access to Encompass data for approved research and analytical purposes, maintaining the organisation’s commitment to high standards of data governance and public trust.
HBS Event Outreach and Attendance
Members of the HBS team have had the opportunity to present at a number of different conferences and events in the past year. These are outlined below:
Groundswell Consortium Data Governance Committee Meeting
Alison was able to attend a Microsoft Teams meeting on Thursday 16th April and present to the Groundswell Consortium Data Governance Committee.
This presentation gave a general overview of the HBS, explaining HBS processes and the way HBS operates. Alison was also able to talk through the application process that must be gone through in order to access any data through HBS. Detail was provided on various active projects with environmental focuses, especially Project E091 ‘5 year follow up - evaluation of the public health impact of the Connswater Community Greenway using administrative data; A natural experiment’, and Project E083 ‘Exploring the relationship between natural environments, COVID-19 and mental health: Evidence from Northern Ireland’, as well as upcoming research.
Exploring the Impact of Sure Start in Northern Ireland Event
Hosted by Cardiff University, with the support of the National Children’s Bureau (NCB), this half-day event was held in the NICVA building on Monday 13th October 2025 from 2PM-5PM, and Rory and James were able to attend.
The event brought together researchers, Sure Start practitioners, and healthcare professionals to consider how Sure Start has impacted family life in Northern Ireland over the past twenty-five years of its operation.
There were 55 attendees, representing all five Health and Social Care Trusts, voluntary and community sector organisations, Sure Starts across Northern Ireland, the Public Health Agency, Queen’s University, Ulster University, Stranmillis College, the Education Authority, the Honest Broker Service, ADR UK, Cardiff University, Bristol University, The Consumer Council, and others.
Rory gave a presentation providing information on who HBS are and the work they do. This included information around bringing together routine (or administrative) data collected during interactions individuals have with HSC NI, the ways for this information to be accessed in a safe and secure way for both internal users and research purposes.
Health Data User Group Annual Conference
Hosted by the Data for Research & Development (R&D) Programme at NHS England, this conference took place in Mary Ward House, London, on Tuesday 25th November 2025.
The conference welcomed around 200 delegates representing life sciences, health technology, academia, charities and public and patient involvement representatives to showcase recent progress and developments across the NHS Research SDE Network and the NHS DigiTrials Service.
HBS staff were key speakers on two panels during the day. Firstly, a panel discussion and Q&A around the topic ‘Connecting nations, connecting data: building the future of health research’. Secondly, a workshop session on the topic of ‘Enabling UK-wide ambition for HDRS - understanding infrastructure across the four nations’.
Big Data Belfast 2025
Big Data Belfast held a conference on Wednesday 22nd October 2025 on artificial intelligence, data analytics, and emerging technologies. This practitioner-led conference provides a platform for knowledge-sharing, innovation and commercial opportunity across the technology ecosystem. Rachel, a member of the HBS Team, was able to attend the conference to maintain awareness of current activity, innovation and emerging themes within the technology and data landscape.
Metadata
Over the past year, HBS made significant progress in improving the availability and visibility of information about the data it manages. For the first time, metadata for the Child Health Systems dataset was published on the HBS website, helping users better understand the content, coverage and potential uses of this data. In addition, metadata for the Enhanced Prescribing Database was reviewed and updated to ensure it remains accurate, clear and up to date.
This work supports greater transparency and improves accessibility for researchers, analysts and other users interested in applying for data through HBS. By publishing and updating metadata, HBS aims to make it easier for users to assess the suitability of datasets for their work and to navigate the application process more effectively.
Looking ahead, HBS plans to continue this programme of improvement. Metadata for the Social Services Client Administration and Retrieval Environment (SOSCARE) dataset and BadgerNet (Neo-Natal) dataset, is expected to be published during 2026/27. This will further strengthen the range of information available on the HBS website and support ongoing efforts to promote the safe and effective use of data for research and service improvement.
Data Access Agreements
Health Data Research UK has launched a new Research Data Access Agreement (RDAA) aimed at standardising contracting arrangements for research projects across the UK. HBS is currently in the process of implementing this new agreement, which will replace the existing ‘In‑person’ and ‘SeRP’ Research Data Access Agreements previously signed by researchers and their institutions following approval of a project by the Health and Social Care Data Access Committee (HSC DAC).
The new Research Data Access Agreement will be a legally binding document and will be signed only by the researcher’s institution and the Business Services Organisation (BSO), differing from the current arrangements that require signatures from individual researchers. However, HBS will continue to require each individual researcher accessing data through the service to sign a separate document setting out the terms and conditions of access.
The main Research Data Access Agreement template is still being finalised and will be shared with applicants during the contracting process for new projects once available.
HSC Data Access Committee – New System for Reviewing Applications
The HSC Data Access Committee is now well established as the replacement of the previous Honest Broker Service Governance Board.
Throughout 2025/26 a new multi-tier scrutiny process was being piloted for reviewing applications and has now been fully adopted by the Committee.
Tier 1 – Relatively low risk projects with clear precedents, suitable for review by correspondence
Tier 2 – Projects requiring discussion at sub panel, with high degree of urgency
Tier 3 – Projects that will be discussed at the full committee, during quarterly meetings
The aim of the new scrutiny process is to reduce turnaround times between an application being fully completed by a researcher and receiving their decision on the application.
A new Data Access Committee SharePoint has also been developed for sharing applications and meeting documents with the Committee, giving full oversight and transparency on developments with the service and applications.
8. User Feedback Survey
Annual Feedback Surveys 2024/25
HBS ran their annual Active User Survey for those users with a current HBS project (regardless of start date).
The 2025/26 User Survey was launched on 11/03/26, and closed on 31/03/26. HBS used Citizenspace to host the surveys for the third time, and continue to find the service to be user friendly and intuitive. Citizenspace is the NI Government online consultation tool widely used across the NICS. An email was sent to all researchers on the launch date which contained a link to the survey as well as a QR code, and reminder emails were issued prior to survey close.
The response numbers have increased for the Active User survey since last year, as we received 8 responses this year, with 7 responses in 24/25.
- In the year 2025/26, we had 69 active researchers working on 50 projects (in both the physical Safe Haven & the Remote Access Platform - SeRP); this represents a response rate of 12% of all active users which is an increase from 11% in 2024/25.
Active User Survey Feedback
Safe Haven
2 of the 8 responders had accessed the Safe Haven during the year. They were ‘very satisfied’ with the availability and booking process. They also responded to say they were ‘satisfied’ with the facilities, and ‘very satisfied’ with the software available to them and the output clearance process. There has been positive feedback around the availability of the Safe Haven on Mondays now as well.
SeRP
Overall satisfaction with SeRP remains high this year.
Most responses indicated that they found SeRP ‘easy / very easy’ to access, though one response noted that there were a few times when the service was down, but that they were well informed and the issues were resolved promptly. This is similar to last year where most users found it ‘easy / very easy’, however it was noted that one user had said SeRP was difficult to access. Overall, the majority of respondents found it ‘very easy’ to access.
6 of the 8 respondents found it ‘easy / very easy’ to find their data and all relevant software once logged in. Two responders found it ‘difficult’, one commented that it could be hard to find and open the data using SQl, and the other that they initially needed help with orientation within the SeRP platform, but HBS staff were able to provide one-to-one help, and after that it was fairly easy. 6 of the 8 respondents said that the SeRP user guide answered some or all of their queries about the data and relevant software once they had logged in, and 7 of the 8 were ‘satisfied / very satisfied’ with the software available to them for their analysis within the platform.
6 of the 8 respondents were ‘satisfied / very satisfied’ with the output clearance process, and 7 of the 8 were ‘satisfied’ that all/most of their outputs were released within the time specified in the HBS guidelines. 5 of 8 respondents indicated that they would find HBS specific training on output clearance processes useful, with comments such as “HBS Specific Training would be very useful for future PhD students and first-time users” and “I think providing examples of when you need intermediate versus final output clearance would be useful for first time users”. The HBS team are currently reviewing this. 7 of the 8 responded to the question relating to the handling of technical difficulties by the SeRP team, and were ‘satisfied / very satisfied’ with how these were handled, however there was a comment that said ‘It could take quite a while to get help/technical issues resolved’
Some of the additional user comments relating to SeRP include:
“Having
experienced a few other similar remote access systems, I like the SeRP
the best. Especially because the database is very well organized,
cleaned and stable. It uses proper SQL database rather than seperate
files in various formats. It is very easy to query and reliable. I feel
relaxed about what I will get out of my queries. Easy to login. I use
Python and R for analysis, managed to find and install required
packages, very important. The output clearance process is fast and
clear. The services do not have complex fees. The support team is very
responsive. Everything is arranged to make you focus on your research
rather than non-productive admin stuff. Most data management is already
sorted. I am grateful for the service.”
“Our
research was not affected in any way, system was able to handle our
large files.”
| Overall HBS Satisfaction | 2025/26 | 2024/25 | 2023/24 |
|---|---|---|---|
| Very Satisfied | 7 (87.5%) | 6 (86%) | 6 (67%) |
| Satisfied | 1 (12.5%) | 1 (14%) | 3 (33%) |
| Total | 8 | 7 | 9 |
Overall, we have received another positive review of the service from our users for the year; 7 of the 8 respondents (87.5%) are ‘very satisfied’ with the service HBS offers, with 1 of the 8 respondents being ‘satisfied’, so there were no negative responses to this question. This maintains the 100% satisfaction level achieved last year. This is great news for us as a team as we constantly strive to provide excellent service to our users, so this positive feedback is welcomed!
Some additional comments from the users include:
“The
SeRP platform generally works very well and credit to the staff for
efficiency in clearing outputs.”
“The HBS staff are
quick and to clear outputs.”
“HBS staff are a
brilliant help.”
Appendix 1
Membership of the HSC Data Access Committee 2025/26
Voting Members
| Role | Name | Job Title |
|---|---|---|
| Chair | Professor Aaron Peace | Consultant Cardiologist/Chief Executive of the Clinical Translational Research and Innovation Centre (C-TRIC) and Clinician |
| Vice-Chair (shared) | Mark Cross | BHSCT R&D Manager |
| Vice-Chair (shared) | Declan Bradley | Deputy Director Public Health, PHA |
| Alternate Vice-Chair | Dr Nicola Armstrong | Senior R&D Programme Manager, HSC R&D Division, PHA |
| Northern Trust | George Gardiner | Medical Director |
| South Eastern Trust | Dr Patrick Donnelly | Clinical Director of Research and Innovation and Clinician |
| Southern Trust | Rachelle Moore | SHSCT R&D Manager |
| BSO | Cormac O’Brien | BSO ITS Head of Operations |
| SPPG | Neil Martin | Director of Strategic Planning, Performance and ICT |
| PHA | Laura Moore | HSC R&D Approvals Manager, HSC R&D Division, PHA |
| PCC | Eddie Ritson | Programme Director·Centre for Connected Health & Social Care |
| DoH | Vacant | Principal Statistician. Head of Hospital Information Branch (stood down) |
| Non-HSC Lay Member | Dr Hilary Russell | Retired medical geneticist and Health and Social Care Research Ethics Committee Chair |
| NIAS | Julia Wolfe | Research & Development Lead, Northern Ireland Ambulance Service |
Non-voting Members
| Organisation | Name |
|---|---|
| BSO | Alan Harbinson |
| BSO | Martin Mayock |
| BSO | Stephen Gibbons |
| ORECNI | Karen Beattie |
| DoH DPO | Charlene Maher |
Appendix 2
HBS Memorandum of Understanding
The Memorandum of Understanding (MOU) is established for the purposes of informing the development of an HBS for Health and Social Care. It has been agreed by:
- Health and Social Care Board (HSCB)
- Business Services Organisation (BSO)
- Belfast Health and Social Care Trust (BHSCT)
- Northern Health and Social Care Trust (NHSCT)
- Southern Health and Social Care Trust (SHSCT)
- South Eastern Health and Social Care Trust (SEHSCT)
- Western Health and Social Care Trust (WHSCT)
- The Department of Health (DoH)
- Public Health Agency (PHA)
- Northern Ireland Ambulance Service Health and Social Care Trust (NIAS)
- Northern Ireland Blood Transfusion Service (NIBTS)
- NI Guardian Ad Litem Agency (NIGALA)
- NI Medical & Dental Training Agency (NIMDTA)
- Northern Ireland Practice & Education Council for Nursing and Midwifery (NIPEC)
- NI Fire & Rescue Service (NIFRS)
- Health & Social Care Regulation and Quality Improvement Authority (RQIA)
- NI Social Care Council (NISCC)
- Patient and Client Council (PCC)
A copy of the Memorandum is available here.
Appendix 3
E107: Assessment of prevalence of severe asthma in Northern Ireland – a record linkage study.
Asthma is a common condition affecting around 134,000 patients (6.5% of the population) in Northern Ireland. Around 5% of patients with asthma do not respond effectively to treatments available in Primary Care. New biologic drugs are available from specialist asthma centres for a subgroup of these patients. However, there are concerns of significant inequality in asthma specialist care across Northern Ireland, with unacceptable variation in the numbers of people with asthma, frequency of asthma attacks, access to specialist asthma services and health outcomes across location, age, ethnic group and social class. With new safe and effective management options available for severe asthma it is vital that we better understand why this variation exists and put in place measures to reduce it.
Healthcare records from General Practice provide the most representative dataset for patients with asthma. We will use GP registration data to identify every patient in Northern Ireland registered with a GP. We will then use linked data from prescriptions, secondary care (e.g., hospital admission and ED attendances) and specialist care (the UK Severe Asthma Registry) to identify every patient with asthma and to create a unique asthma dataset within Northern Ireland. We plan to use this dataset to understand how common severe asthma is, why some patients have worse outcomes, and why some patients have more difficulty accessing specialist asthma care.
Our study is supported by Health Data Research UK, a research consortium that aims to unite the UK’s health and care data to enable discoveries that improve people’s lives.
Back to Projects Approved 2025/26
E108: Do antenatal factors influence susceptibility to mental ill-health in those exposed to early life adversity? Part of a comprehensive investigation into mental ill-health & self-harm in Northern Ireland (NI)
Difficult experiences in childhood, like abuse or neglect, can lead to mental health problems later in life including depression, self-harm, and suicide. Researchers are aware of this connection, however, it’s not clear why some children who go through these difficult experiences develop mental health problems while others don’t. This suggests that something makes some children more at risk.
This study aims to determine whether what happens to babies before birth might affect how well they cope with difficult childhood experiences later on. During pregnancy, conditions in the womb can influence how a baby’s brain develops. This may affect how they respond to stress and manage emotions throughout life and therefore make them more vulnerable to developing poor mental health.
The research team will examine health records for everyone born in Northern Ireland between 1990 and 1999. By linking health and social care data, the team will follow individuals throughout their lives, connecting information from different sources to build a complete picture of their life pathways. This includes birth information such as birth weight and how early or late they were born, social services records which indicate if children experienced difficult childhood circumstances, prescription medications for mental ill health, self-harm data, and death records to identify deaths by suicide.
By looking at all this information together, the research team hopes to understand whether babies who had problems before birth, for example were born prematurely or with low birthweight, are more vulnerable to developing mental health difficulties compared to those born at normal birthweight. The study will focus on children who have all experienced difficult childhood circumstances to see if birth factors make some children more at risk. This could help healthcare professionals and social workers identify and better support children who may be at increased risk.
Back to Projects Approved 2025/26
E109: Exploring inpatient hospital and Accident & Emergency (A&E) department use in end-of-life care patients in Northern Ireland
This project is funded by Marie Curie and will look at how people in their last year of life in Northern Ireland use hospital and ambulance services. Many people would prefer to stay at home, but some patients need emergency care, leading to unwanted hospital visits. Previous research in Northern Ireland showed that in 2015, three out of four people who died of cancer had at least one emergency inpatient hospital visit in their last year of life. These visits can cost a lot and may not be necessary if routine home care i.e. access to adequate pain relief or palliative care services, was adequate, and furthermore may also prevent the person dying in hospital rather than at home. The aim of the project is to better understand how people use hospitals and emergency care in the last year of their lives. A team of researchers from Queen’s University Belfast and the Northern Ireland Ambulance Service will use linked hospital, A&E and death data to: - Look at hospital and A&E use by end-of-life patients from 2014 to 2023 to find patterns and impact on resources. - Count the cost and length of hospital stays, looking for ways to reduce admissions and save resources. - Compare data by age, sex, illness type, and time of care (weekdays vs weekends). Accessing the healthcare datasets for this project will help us to identify trends and areas for improvements which will help us to achieve the overall goal of this research, which is to work towards improving home-based end-of-life care, reducing unneeded hospital visits, easing the health system’s burden, while at the same time achieving better quality and more cost-effective end-of-life care. The project has been reviewed by scientific experts and patient representatives as part of the funding process.
Back to Projects Approved 2025/26
E110: Examination of SOSCARE data on social work turnover in children’s services and related impact on children in the child protection system in Northern Ireland
We started this research because there are growing worries about how often social workers leave their jobs and how this affects children, families, and carers in Northern Ireland. Problems like not having enough staff, too many cases to manage, and frequent staff changes are making it harder to provide stable support. This instability can seriously affect children and families who rely on these services. People using the services have told us they often have to deal with broken relationships, delays in court and placement decisions, and not having the same worker to support them over time. The goal of this study is to gather real stories and evidence that can help shape policies, improve how social workers are supported, and help keep good workers in the job. Ultimately, we want to help make sure children and families get better, more reliable support. One of the main focuses of this research is to understand what it’s like for children, young people, families, and carers when their social worker changes often. This is an area that hasn’t been looked at very much, even though it’s really important. When social workers leave, it can damage trust and disrupt important relationships. We want to understand how this affects people and the care they receive. We’re also exploring whether social worker turnover happens more often in poorer areas, especially since research has shown that children living in poverty are more likely to be involved with child protection services (Bywaters et al., 2020). Other studies, like the one by McFadden et al. (2024), have shown that child protection social workers often face high turnover and burnout. Their research found that too many cases per worker is a major reason why people leave. What makes our study new is that we’re using real data from the SOSCARE system to look at how turnover affects service users in Northern Ireland. We’re also talking directly to people—through focus groups and interviews—who have experienced these services themselves, so we can better understand the real-life impact.
Back to Projects Approved 2025/26
E111: Understanding trends and sociodemographic factors associated with childhood vaccination uptake in Northern Ireland: A national data linkage study
Vaccines are one of the most significant medical breakthroughs in history and play a crucial role in maintaining people’s health, particularly through childhood vaccinations. However, in recent years childhood vaccine rates around the world have stopped rising, and in some places, have begun to fall. At the same time, people are becoming increasingly unsure and suspicious of vaccines, a trend known as ‘vaccine hesitancy’. While the UK has one of the most extensive and successful childhood vaccine programmes, it has not escaped this growing trend of falling uptake. In Northern Ireland (NI), fewer children each year have been receiving their routine vaccines, leaving those who are unwilling or unable to vaccinate increasingly vulnerable to disease and placing more pressure on an already struggling healthcare system. For decision-makers and public health leaders in NI, stopping the decline in childhood vaccine uptake begins by understanding what factors motivate parents’ choices to vaccinate their children. It is likely that certain groups of people in society are more vaccine hesitant than others or face more challenges accessing vaccination services, which could lead to differences in uptake across the population. Research shows that various factors such as ethnicity, income, education, and geographic location, are all linked to childhood vaccine uptake. These factors help shape parents’ vaccination behaviours by influencing their perception and knowledge of vaccine safety and effectiveness, as well as their access to the healthcare system and trust in medical professionals. However, we do not fully understand which factors have the biggest impact on childhood vaccine uptake in NI. This project aims to investigate which social, cultural, and structural factors drive childhood vaccination decisions in NI, with the goal of guiding the development of targeted solutions to address falling uptake and protect children’s health in the region.
Back to Projects Approved 2025/26
E113: NI BabyHearts 2: Examining preconceptional and antenatal factors in relation to the developmental and educational outcomes of children with Congenital Heart Disease
Congenital Heart Disease (CHD) is a condition where a baby is born with problems in the structure of their heart. These issues can affect how blood flows through the heart and to the rest of the body. CHD is the most common type of birth defect, affecting nearly one in three babies diagnosed with a congenital condition, before or shortly after birth. CHD can have long-term effects on a child’s health and development, including delays in learning and behaviour. While we know that CHD is likely caused by a mix of genetic and environmental factors, we still don’t fully understand how things like a mother’s health before and during pregnancy, or family circumstances, might influence how children with CHD grow and learn.
The NI BabyHearts 2 study aims to explore these questions by following up with children whose mothers were part of the original BabyHearts 1 study (2014-2017), now children are aged between 8 and 11 years old. BabyHearts 1 aimed to understand what might increase or reduce the chances of a baby being born with CHD whereas this study will compare children with CHD to those without, using medical records, questionnaires completed by parents, and assessments done by the children themselves. These assessments will look at things like thinking skills, communication, and school performance.
Researchers will also use data collected during pregnancy and shortly after birth, including information on medications taken by mothers, birth outcomes, and other health details. By linking all this information together, the study hopes to identify which early life factors are most important in shaping the health and development of children with CHD.
The findings will help improve care and support for children with CHD and guide advice given to women before and during pregnancy. Ultimately, this research could influence public health policies and lead to better outcomes for children born with heart conditions.
Back to Projects Approved 2025/26
E114: Assessing population health Improvement through neighbourhood renewal programmes
Where people live has a large impact on health and well-being. Area-based investments, known as neighbourhood regeneration schemes, aim to improve the places where we live and are often targeted to the poorest areas. It is possible these investments can improve population-level health and well-being. However, it is not clear whether these improvements lead to better health for the people who live there, especially in the long term. In Northern Ireland, several disadvantaged areas have been targeted for major government investments over the past two decades, including the Neighbourhood Renewal Strategy (2003-2015) and the more recent Urban Villages initiative (2016-present). However, robust investigation of these initiatives in relation to health outcomes is lacking. This project aims to explore whether people who live in neighbourhoods that received large government investments experience better physical and mental health than those who live in similar areas that did not receive an investment. To achieve this, we will utilise existing health data including hospital accident and emergency (A&E) visits, prescription data, and census data. Additionally, we will investigate whether different types of investments have varying effects on health and well-being. The findings of this study will improve our understanding of how changes to neighbourhoods can support better health. This will help guide future investments in local areas to support fairer, healthier, and more resilient communities.
Back to Projects Approved 2025/26
E115: Why do some kidney diseases recur following kidney transplantation? A review of glomerulonephritis in Northern Ireland (NI) and assessment of the implications for recurrent glomerulonephritis in kidney transplant recipients
Glomerulonephritis is a group of conditions that cause progressive inflammation and scarring of the kidneys. Over time this can lead to kidney failure, meaning people may need dialysis or a kidney transplant. Even after a kidney transplant, these diseases can return in the new kidney and shorten how long it works. Glomerulonephritis is diagnosed on kidney biopsy. Kidney biopsy has become a safer and more acceptable technique over the last few decades. It remains unclear in Northern Ireland – however – just how common these diseases are and how rapidly they progress. We have many new and expensive treatments becoming available, so it is vital that we understand the natural history of glomerulonephritis locally. Our project will review all kidney biopsies taken in Northern Ireland between 2006 and 2025 and link them with routine laboratory results (for example, blood and urine tests that show kidney function and activity of disease). Using de-identified (pseudonymised) data provided securely via the Honest Broker Service (HBS), we will find out how common each disease is, who it affects, and how it behaves over time. We will also study people who received a kidney transplant because of glomerulonephritis. We will assess how often each disease returns, identify factors linked to recurrence and to transplant loss, and explore whether patterns in routine tests can warn of returning disease earlier. Currently, the only way to confirm recurrence is a kidney biopsy, which is invasive and usually done once problems are already visible. Earlier warning could prompt timely checks and better treatment. What this means for patients and services: clearer information for patients about their condition, better planning of renal and transplant services in Northern Ireland, and evidence to target new therapies to the people most likely to benefit—ultimately aiming for longer-lasting kidneys and fewer invasive procedures.
Back to Projects Approved 2025/26
E116: Big Data for Complex Disease Programme
Big Data for Complex Disease (BDCD) is a programme of data research that offers unique opportunities to link and examine de-identified patient health records and health-related information. We will bring together routine health data alongside specific disease registries held as national datasets available for access to consider how other diseases interact with cancer and heart and circulation problems (cardiovascular disease or CVD).
This research programme, and the research resource we are requesting to establish through this application, will enable researchers to use health data to better understand: • causes of cancer and CVD, the co-morbidities and other diseases associated with them • who is most at risk and why • which current treatments are best and what differences there are in how well these treatments work • how to improve prevention and care for patients so that there are fewer deaths and less serious health problems Experts in data analysis, clinical care, and people with personal experience of these conditions will work together to: • Decide on the most important research questions. • Figure out the best ways to analyse complex information from different sources. • Share the research findings.
In relation to CVD/cancer, future work associated with the research resource will aim to uncover: • signals and patterns in health data that show higher risk, helping us develop ways to prevent these diseases. • how these and other complex diseases, like diabetes or mental health, are connected • how inequalities (like age, gender, ethnicity, poverty and where people live) change the risks, treatments and outcomes • how to use this new knowledge to influence health-related policy and best practice in the UK and globally Together, this programme, the research resource and future projects will create real benefit for patients and the public through less harm caused by these diseases.
Back to Projects Approved 2025/26
Appendix 4
NILS147: Understanding trends and sociodemographic factors associated with childhood vaccination uptake in Northern Ireland: A national data linkage study
Over the last 10 years, there is evidence that childhood vaccination rates have been steadily declining globally and locally, leaving those who are unable or unwilling to receive vaccinations increasingly vulnerable to vaccine-preventable diseases. This downward trend coincides with a rise in hesitancy towards vaccines, as parents grow increasingly unsure about whether to vaccinate their children. The COVID-19 pandemic may have amplified this distrust, while also showcasing how digital platforms have enabled the rapid dissemination of misleading vaccine information. Furthermore, inequalities in uptake have become increasingly apparent, with widening disparities in uptake observed across different population groups. While the UK has one of the most extensive and successful childhood vaccine programmes, it has not escaped the growing trend of falling uptake. In Northern Ireland, falling childhood vaccination rates are a significant public health concern, with coverage for all routine childhood vaccinations at 1,2 and 5 years of age sitting below targets set by the World Health Organization.
Studies show that various sociodemographic and health factors across multiple populations and vaccine types are associated with childhood vaccination uptake. These factors play an essential role in shaping parental vaccination behaviours by influencing their perception and knowledge of vaccination efficacy and safety, as well as their access to healthcare resources and trust in medical professionals. However, the specific factors that influence parental decision-making around childhood vaccinations in Northern Ireland are not well-defined. This project aims to investigate the social, cultural, and structural drivers of childhood MMR vaccine uptake among mothers in Northern Ireland, with the goal of guiding the development of targeted solutions to help empower parental vaccine decision-making and address potential inequalities in uptake across the region
Back to NILS Projects Approved 2025/26
NILS653: Associations between disability and education/employment outcomes in Cerebral Palsy: A data linkage study of the Northern Ireland Cerebral Palsy Register (NICPR) and NILS
Cerebral Palsy (CP) indicates a group of permanent physical disabilities caused by non-progressive injuries to the immature or developing brain. The condition has a relatively low point-prevalence of 1.7 per 1,000 live births every year, yet it is estimated to be the main cause of physical disability in childhood. Children with CP display varying levels of gross motor difficulties, but up to one third of these children have severe motor impairments that require physical assistance or powered mobility in most settings. CP children with severe motor disability are also at increased risk of significant difficulties in other domains, including learning impairments.
The impairments and activity limitations associated with CP can impact on the individuals’ ability to participate in education and employment, yet there are few studies that investigated these outcomes. The study we will outline here aims to investigate educational attainment and employment outcomes among individuals with CP and compare them to those of age- and gender-matched peers in the general population.
The NI Cerebral Palsy Register (NICPR), which has registered cases of individuals with CP born from 1977 onwards, provides a reliable source of clinical ascertainment. By linking NICPR data with the Northern Ireland Longitudinal Study (NILS), which includes rich socioeconomic and census data, we will investigate how individuals with CP differ in educational and employment outcomes compared to matched controls, and how these outcomes are moderated by contextual modifiable factors.
Back to NILS Projects Approved 2025/26
Appendix 5
List of Journal Articles Facilitated by HBS, 2025 & 2026
| Year | Topic | Title | Authors | Journal | Link |
|---|---|---|---|---|---|
| 2025 | Social Services, Mental Health, Child Welfare | Childhood contact with social services, self-harm and suicidal or self-harm ideation in young adulthood: a population-wide record-linkage study. | McKenna S, O’Reilly D, Ross E, Maguire A. | Epidemiology and Psychiatric Sciences. | https://doi.org/10.1017/S204579602400088X |
| 2025 | Maternity, Preconception Health | Preconception Health Indicators and Deprivation: A Cross-Sectional Study Using National Maternity Healthcare Data | Emma H. Cassinelli, Lisa Kent, Kelly-Ann Eastwood, Danielle A. J. M. Schoenaker, Michelle C. McKinley, Laura McGowan | An International Journal of Obstetrics and Gynaecology | https://doi.org/10.1111/1471-0528.18256 |
| 2025 | Maternity | Prevalence and patterns of pre-existing multimorbidity in pregnancy in Northern Ireland: a population-based, retrospective study using linked routinely collected healthcare data | Lisa Kent, Siang Ing Lee, Megha Singh, Steven Wambua, Katherine Phillips, Utkarsh Agrawal, Amaya Azcoaga-Lorenzo, Colin McCowan, Jonathon Kennedy, Holly Hope, Ngawai Moss, Rachel Plachcinski, Catherine Nelson-Piercy, Mairead Black, Sinead Brophy, Aideen Maguire, Dermot O’Reilly, Krishnarajah Nirantharakumar, Kelly-Ann Eastwood; MuM-PreDiCT Group | BMC Pregnancy Childbirth | https://doi.org/10.1186/s12884-025-07771-1 |
| 2025 | Homelessness | Homelessness among young people leaving care in Northern Ireland |
Sarah McKenna, Emma Ross, Lisa Kent, Aideen Maguire, Dermot O’Reilly*, Michael Donnelly *Posthumous authorship |
ADR UK | https://www.adruk.org/news-publications/publications-reports/data-insight-homelessness-among-young-people-leaving-care-in-northern-ireland/ |
| 2025 | Social Care | Data Resource Profile: The Social Services Client Administration and Retrieval Environment (SOSCARE) administrative dataset for children’s social care in Northern Ireland | McKenna, S., Murphy, S., O’Reilly, D., Bunting, L. and Maguire, A. | International Journal of Population Data Science | https://ijpds.org/article/view/3138 |
| 2025 | Maternity | Prescribing of benzodiazepines during pregnancy in Northern Ireland: A trend analysis between 2011 and 2023 | Dervla Quinn, Michael Donnelly, Ciaran O’Neill | Obstetrics & Gynaecology | https://obgyn.onlinelibrary.wiley.com/doi/full/10.1111/1471-0528.18234?campaign=woletoc |
| 2026 | Dementia | Antidepressant and anxiolytic medications and risk of mortality in people with dementia: A nested case-control study in Northern Ireland | Catherine J. Sinnamon, Carmel M. Hughes, Chris R. Cardwell, and Heather E. Barry | Journal of Alzheimer’s Disease | https://journals.sagepub.com/doi/10.1177/13872877251414888 |
| 2026 | Mental Health | Mental health service users’ pre- and post-therapy hospitalization rates: A data linkage study | J.A. Jordan, A. Elliott, F. Hill, K.F.W.Dyer | British Journal of Clinical Psychology | https://bpspsychub.onlinelibrary.wiley.com/doi/10.1111/bjc.70039 |
| 2026 | Social Care | Children’s Social Care and Homelessness In Northern Ireland - Connecting Data, Changing Futures (Includes YouTube animation) | Sarah McKenna, Emma Ross, Lisa Kent, Aideen Maguire, Michael Donnelly | ADR UK | https://www.youtube.com/watch?v=a6brznAE1A0 |
| 2025 | Severe Asthma | Investigating the association between biologic initiation and medication adherence in severe asthma: an analysis of linked data | Amy Shackleford, Liam G. Heaney, P. Jane McDowell, Gwyneth A. Davies, Claire Butler, Joan Sweeney, John Busby Corresponding author for this work | Journal of Allergy and Clinical Immunology: In Practice | https://www.jaci-inpractice.org/article/S2213-2198(25)00610-5/fulltext |
| 2025 | COVID-19 | Trends in psychotropic medication across occupation types before and during the Covid-19 pandemic: a linked administrative data study | Finola Ferry, Lisa Kent, Michael Rosato, Emma Curran, Gerard Leavey Corresponding author for this work | Social Psychiatry and Psychiatric Epidemiology | https://link.springer.com/article/10.1007/s00127-025-02909-0 |
| 2025 | Severe Asthma | Stage at diagnosis and breast cancer-specific mortality in breast cancer patients treated with antidepressants, anxiolytics, and antipsychotics: a population-based cohort study from Northern Ireland | Sarah M. Baxter, Charlene M. McShane, Stuart A. McIntosh, Damien Bennett, Lynne Lohfeld, Daniel R. S Middleton, Gerard Savage, Deirdre Fitzpatrick, Joseph Kane, Ann McBrien, David McCallion, Anna Gavin, Chris R. Cardwell Corresponding author for this work | Breast Cancer Research and Treatment | https://link.springer.com/article/10.1007/s10549-025-07766-8 |
| 2025 | Maternity | Medication use from conception to the first antenatal appointment: agreement between maternal self-report to midwife and prescribing records in Northern Ireland in 2011-2016 | Given, J., Dolk, H., Little, A. and Loane, M. | International Journal of Population Data Science | https://ijpds.org/article/view/2910 |
| 2025 | Child Welfare | Measuring the impact of a place-based early years policy (SureStart) on early years outcomes using linked administrative data and a naturally occurring experiment. | Le Zhang, M. (2025) | International Journal of Population Data Science | https://ijpds.org/article/view/3048 |
| 2026 | EPD Resource Profile | Data Resource Profile: The Enhanced Prescribing Database (EPD) in Northern Ireland | Ross, E., Cooper, J., O’Reilly, D. and Maguire, A. | International Journal of Population Data Science | https://ijpds.org/article/view/3354 |
| 2026 | Child Welfare | ntimate partner violence, multiple mental health conditions and risk of small vulnerable newborn births: a maternity population-based data linkage study | Lisa Kent, Claire Kerr, Lorna Lawther, Kathryn M. Abel, Holly Hope, Krishnarajah Nirantharakumar, Kelly-Ann Eastwood, Aideen Maguire | The Lancet Clinical Medicine | https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(26)00245-2/fulltext |
| 2026 | Child Welfare | Sure Start in Northern Ireland: Evidence of Impact on Health and Social Care | Zhang, Meng Le; Griffith, Gareth; Holland, Sally; & Elliott, Martin | CASCADE Wales | https://cascadewales.org/wp-content/uploads/sites/3/2024/07/Sure-Start-NI-Policy-Briefing-May-2026.pdf |
| 2026 | Antipsychotic Drugs, Pregnancy | Prescribing of Antipsychotic Drugs during Pregnancy: A Trend Analysis between 2011 to 2023 | Dervla Quinn, Michael Donnelly, Ciaran O’Neill | Obstetrics & Gynaecology | https://onlinelibrary.wiley.com/doi/epdf/10.1002/pds.70409?campaign=woletoc |
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