Health, education and social outcomes of children with visual impairment and blindness (VI/SVIBL) - SHINE study

University College London (UCL) requires access to NHS England (NHSE) data for the purpose of the following research project: Health, education and social outcomes of children with visual impairment and blindness (VI/SVIBL) - SHINE study.

The study aims to improve vision, education, health outcomes and experiences of children and adolescents living with sight impairment through better policies, services and care through evaluation of health utilisation and educational outcomes using three data sources. Data source 1 is BCVIS and BCVIS2 cohort study conducted by UCL (clinical data and identifiers required for linkage), Data source 2 is the National Pupil Database from the Department for Education and Data source 3 is health data from NHS England.

Sight impairment from childhood adversely affects development, schooling/education, employment and other economic prospects, independent living, social integration and general and mental health. To help children and adolescents with eye conditions or sight impairment to realise their potential, the UK has health and education policies and specialist services that aim to ensure early diagnosis, timely treatment and habilitation, to meet complex needs into early adulthood. The effectiveness of any of these policies and services has never been evaluated in a comprehensive national study.

The proposed study is the first investigation anywhere in the world of the long term health and educational outcomes of childhood onset vision impairment or blindness. It aims to improve the lives of children/adolescents with sight impairment across their full life course by identifying what is currently working well, where there is room for improvement, and which new services or interventions are needed in eye health, child health and education services. So, it is unknown what is working well in terms of existing UK eye health and child health services and policies; nor what needs to be improved, for example through new policies and services. Therefore, currently policy-makers (e.g. Department for Health) and commissioners of services lack national-level information for their decisions. Similarly national benchmarks are not available to know how well their local services are delivering and where there is scope for improvement. Crucially children/adolescents with sight impairment and families lack information to make them effective partners in decision-making about care, especially after transition into adult services. Finally, third sector and patient groups lack information for effective advocacy.

This study will analyse health outcomes and health care use (and their trajectories and interrelationships) of children/adolescents with sight impairment included in the British Childhood Vision Impairment Studies (BCVIS). This will provide currently lacking, but essential, information for policy makers, professionals delivering services, affected individuals and families to inform decision-making and improve or develop new policies, services and care.

The following is a summary of the aims of the research project provided by UCL:

• To improve the lives of children/adolescents with sight impairment and the adults they become by identifying what is currently working well, where there is room for improvement, and which new services or interventions are needed in eye health, child health and education services.

• To investigate disparities in health outcomes and healthcare utilisation among children and young people with visual impairment (VI), severe visual impairment (SVI), or blindness (BL).

• To assess the potential for improving broader health outcomes through early detection and specialist care provision.

• Compare health outcomes, mortality/survival and health care utilisation of children and young people with VI/SVI/BL to those without impaired vision using published studies.

• Improve accuracy of identification of childhood-onset vision impairment or blindness using NSSE HES, given low accuracy (ICD codes for VI and Blindness in HES capture 10% of the target population) by creating a representative ICD phenotype/diagnosis code list.

The study teams research indicates substantial differences will exist in health and healthcare utilisation between cohort participants and their sighted peers, with around 60% of the cohort experiencing additional serious systemic conditions. The study is therefore not seeking to identify small or subtle differences in outcomes. For example, mortality is expected to be considerably higher, as evidenced by BCVIS studies showing mortality ten times higher in the first year of life compared with the general child population.

Prior research and clinical expertise also confirm that within-cohort (BCVIS) comparison is particularly important, especially at the threshold between VI and SVI/BL, where functional impact changes significantly (e.g., requiring large print, Braille, or mobility assistance).

Given the rarity of childhood VI, it is scientifically acceptable to treat the general UK population as the control. Comparisons will therefore draw on:

1. Publicly available data from NHS England and the National Child Mortality Database (NCMD), including hospital admissions by age and ethnicity, outpatient activity, A&E attendances, emergency admissions, and child mortality rates, contextualised with ONS mid-year population estimates.

2. Published literature examining health outcomes and healthcare utilisation in the general UK population. Examples include:

a. Beaney et al. (2021), reporting healthcare utilisation by age, ethnicity, and socioeconomic status in Northwest London.

b. Ruzangi et al. (2020), describing trends in healthcare use in children under 15 years from 2007–2017.

c. El-Qasem et al. (2025), examining all-cause hospital admissions among children in England.

d. Sidebotham et al. (2014), analysing child mortality in England and Wales.

e. Zylbersztejn et al. (2018), reporting mortality rates by age, sex, and socioeconomic status in a nationally representative UK cohort.

The following NHS England Data will be accessed:

• Hospital Episode Statistics - necessary to assess healthcare utilisation.

o Admitted Patient Care

o Accident & Emergency

o Critical care

o Outpatients

• Emergency Care Data Set (ECDS) - necessary to assess urgent healthcare needs.

• Mental Health Services dataset -necessary to study use of mental services by the individuals in the cohort.

• Civil Registrations of Death - necessary to study mortality in the cohort.

These datasets are necessary to evaluate all aspects of healthcare utilisation (physical and mental health) and survival of children and young people with visual impairment. In order to perform the comprehensive analysis required to answer the research questions, a complete account of hospital care and procedures is needed for the cohort of interest, along with information about their deaths if available as the study team expect a non-negligible share of individuals in the cohort to have died.

The Data will be identifiable (postcode) - necessary to enable:

• Computation of the Income Deprivation Affecting Children Index (IDACI), needed for a socioeconomic analysis aimed at assessing the extent of children’s health inequalities (difference in access by socioeconomic status and ethnicity).

• Evaluation of geographical patterns of healthcare utilisation (patterns of care provided in specialist services Trusts rather than local services).

• Improved accuracy of record linkage to NPD as postcodes in HES OP will be more up to date and specifically relate to school going period of life. The study team hold post code at initial diagnosis – for all the BCVIS cohort participants but since many participants were diagnosed at age under 1 year, this postcode is not usable by DfE for NPD in which each separate database uses postcode at that stage of schooling eg KeyStage 1.

Postcode at time of episode (HOMEADD) is requested only for HES Outpatients (HES OP) as data minimisation strategy for sensitive data fields.

The Data will be minimised as follows:

• Limited to a study cohort contained within the BCVIS1 & BCVIS2 studies identified by UCL.

• Limited to a single cohort of 1204 individuals with vision impairment.

• Limited to data between 1997/1998 and 2024/2025.

All Data available for these individuals are required to ensure that no bias is introduced in the analysis and to assess healthcare utilisation for the study participants as many were born before 2000.

UCL is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

This processing is in the public interest as this will provide the first analysis of health outcomes and trajectories and health care utilisation of children and young people with visual impairment. This project hopes to allow quantification of associated healthcare costs in the future. This research hopes to inform national health policy and identify areas for improvement.

The funding is provided by Medical Research Foundation. The funding is specifically for the project described. Funding is in place until 31 March 2028.

The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure back-up of data stored in UCL’s Data Safe Haven.

The Department for Education acts as a data processor for the purpose of using postcodes to securely match records with the National Pupil Database (NPD).

Data will be accessed by substantive employees of UCL and Department for Education.

The project has been developed with patients and the public. LOOK (patient-led organisation) is a formal co-applicant on the grant that supports this research and contributed to study design. Patients and children affected will be members of the study advisory group.

The study team have the support of two other major national charities; Royal National Institute of Blind People (RNIB) and Vision UK, as well as the UK’s Children and Young People’s Vision Impairment Network (CYP-VI network) which comprises patient led multi-professional public advocacy bodies that help children and their families with visual impairment and advocate for services, and further medical research. These organisations represent the views and interests of children with VI/SVIBL throughout the U.K., and they will promote the study to support the use of linkage plan.

Specifically, the research team has received input from the local GenerationR Alliance Young People’s Advisory Group (YPAG). The Moorfields Hospital Young Persons Advisory Group (eye-YPAG) is made up of 25 children and young people with vision or eye disorders who range in age from 8 to 16 years old. There was strong uniform support for the study (with the group rating the study as ‘important’ or ‘very important’) and input from the group was used to develop public and patient facing study literature. The group strongly supported the collection of the data for the purposes and in the way described above (including the use of unconsented data) and assisted with development of a dissemination strategy for study methods and findings. The discussion with the YPAG included consideration of the language used to explain use of unconsented data.

• Data Transfer from UCL to NHS England

UCL will transfer data securely to NHS England. The Data will consist of identifying details (specifically NHS Number, Date of Birth, Prior Postcode, Gender, Name, Surname and a unique Study ID) for the cohort to be linked with NHS England data.

• Data Transfer from NHS England to UCL

NHS England will provide the relevant records from the following:

Hospital Episode Statistics:

• Admitted Patient Care

• Accident & Emergency

• Critical Care

• Outpatients

Emergency Care Data Set (ECDS)

Mental Health Services dataset

Civil Registration of Death.

The Data will contain the identifying data item 'Postcode' which is required to facilitate secure matching with the National Pupil Database (NPD) and to link the Data with other individual-level data already held by the recipient .

UCL will link the NHS England data to the BCVIS clinical dataset within UCL Data Safe Haven, linkage undertaken by substantive employees of UCL.

• Data Transfer from UCL to Department for Education

UCL will transfer the postcode recorded at the time of the HES OP episode, as provided by NHS England, along with the other identifiers already held by UCL that are required for linkage. This information will be shared securely together with any previously held postcode data. The transfer will follow the processes set out in UCL’s Data Sharing Agreement with the Department for Education, enabling linkage with the National Pupil Database (NPD).

The purpose of this transfer is to maximise the accuracy of matching cohort members with their NPD records, which is most reliable when at least one postcode is available from the schooling age band. Once the IDACI has been computed and the linkage to the NPD has been completed and verified, the postcode at the time of the episode will be securely deleted.

The linkage between the identifiers provided to the Department for Education and the NPD is carried out exclusively by substantive employees onsite at the Department for Education.

• Data Transfer from Department for Education to UCL

Department for Education will securely transfer the linked NPD data to UCL via direct data transfer.

UCL will link received NPD data from Department for Education with the BCVIS clinical dataset in UCL Data Safe Haven.

The final linkage required to create the analysis dataset that combines the BCVIS clinical data, Department for Education NPD data and NHS England data will be undertaken by UCL in the UCL Data Safe Haven.

The Data will be stored and processed in the UCL Data Safe Haven on servers at UCL. UCL uses offsite back-up services provided by VIRTUS Data Centre's. UCL stores data on the Cloud provided by Amazon Web Services as contracted by UCL.

The Data will be accessed by authorised personnel onsite at UCL/ The Department for Education and via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England/Wales at any time.

Access is restricted to employees of UCL and Department for Education who have authorisation from the Principal Investigator.

Amazon Web Services are not permitted to access the Data. The Department for Education are not permitted to access linked data in the UCL data safe haven.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality.

The Data will be linked at the person record level, combining information from the National Pupil Database (provided by the Department for Education) with cohort data from the British Childhood Vision Impairment Studies (BCVIS), which is already held by the recipient.

The identifying details will be stored in a separate database to the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

Researchers from UCL will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

• Submissions to open-access peer reviewed journals (interim analysis results expected 12 months after reception of data; 4 submissions expected for final analyses within 3 years from data receipt). These will include The Lancet/The Lancet Child and Adolescent Health.

• Presentations and abstract publication at appropriate conferences (e.g. Annual Meetings of the Association for Research in Vision and Ophthalmology, Scientific Meeting of the British & Irish Paediatric Ophthalmology and Strabismus Association).

• Publication of findings on UCL website.

• Production of an ICD code list as a ‘phenotype code’ list (free of charge) to identify children with visual impairment from HES data. This resource will be available and valuable to researchers working in the field of vision and eye health, as it will assist in understanding the low ascertainment of vision impairment and blindness in HES data. It will also provide guidance on how ICD codes can be used to construct cohorts of individuals with ‘probable’ vision impairment or blindness, which may be sufficiently representative of the UK population of children and young people with these conditions.

The outputs will not contain any individual level NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Open-access publications.

• Participation in academic conferences with talks or posters to engage with the academic community.

• The research findings will also be shared via UCL social media.

• A report of findings to the All-Party Parliamentary Group on Eye Health and Visual Impairment.

• The study team will produce briefing documents aimed at clinicians and paediatricians, as well as the Royal College of Ophthalmology (Paediatrics subcommittee).

• The study team will engage with the formal co-applicant LOOK, third-sector advocacy groups and charities, and children and their families via press/media engagement, workshops involving child health and disability experts, and patient information leaflets.

The main final outputs are expected to be disseminated within approximately 36 months from receiving the data.

The findings of this novel research study are expected to contribute to evidence-based decision-making for NHS Department of Health Social Care, healthcare commissioners, other policy-makers, local decision-makers such as paediatricians and ophthalmologists, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.

The use of the data could:

• help the system to better understand the health and care needs of children with visual impairment and blindness.

• lead to the identification or improvement of health and care system design to improve health and care outcomes or experience.

• advance understanding of regional and national trends in health and social care needs.

• inform planning health services and programmes, to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

This project hopes to raise awareness and provide information necessary for better provision and greater ‘joining up’ of health and social care to meet the complex needs of disabled children at a time when commissioning of relevant services is being radically changed through the implementation of Integrated Health Care Boards.

The findings of this research, disseminated to a range of audiences and via appropriate media and PPIE activities, will provide the first body of evidence for the evaluation of health care utilisation and needs of children and young people with visual impairment, and for the design of policy interventions related to NHS care aimed at improving health outcomes for this population.

The study team will engage with project collaborators from the third sector (formal co-applicant LOOK and supporting charities RNIB and Vision UK, as well as the UK’s Children and Young People’s Vision Impairment Network) to provide a clear, age-appropriate dissemination of the results and their implication for patients and their families.

Yielded Benefits is not a requirement for new applications.