NPDA HES extract 2019

The primary aims of the National Paediatric Diabetes Audit (NPDA) are to facilitate health providers and commissioners’ ability to measure and improve quality of care, and to contribute to the continuing improvement of outcomes for children and young people with diabetes (up to the age of 24) and their families receiving care within paediatric diabetes units. The audit is funded by NHS England and the Welsh Government, managed by the Royal College of Paediatrics and Child Health (RCPCH), and commissioned by the Healthcare Quality Improvement Programme (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP).

NHS Digital data supplied under this Agreement was previously used under another DARS agreement (DARS-NIC-34964). The data released under that agreement has since been destroyed and the agreement has been closed. Hence the request for another new data sharing agreement for HES data. The purposes are the same - to carry out the NPDA.

The NCAPOP consists of more than 25 clinical audits that cover a range of medical, surgical and mental health conditions. Their purpose is to engage clinicians across England and Wales in systematic evaluation of their clinical practice against standards, and to encourage improvement in the quality of care.

The audit has been collecting data since 2003 and has achieved a participation rate of 100% of paediatric diabetes units since 2011 when the RCPCH was first awarded the contract to deliver the NPDA further to a competitive tender process. The audit is supported by a Project Board whose membership comprises representatives of professional groups involved in paediatric diabetes care, representatives from the national network for children and young people with diabetes, and Diabetes UK.

The joint data controllers are NHS England and HQIP. RCPCH perform the analysis of the admissions data, and produce the report, which is then reviewed by NHS England, the Welsh Government and HQIP before publication. The national admissions report is one of the primary deliverables that the RCPCH is contracted to produce, in addition to annual core reports (national and unit level) on the care and outcomes received and achieved by children and young people with diabetes in England and Wales. Deliverables also include the biannual parent and patient experience measure (PREM) surveys reported at national and unit level, spotlight audits at national and unit level, and events including a national conference. Lay summaries of all national reports are produced in hardcopy and animated form to help raise awareness of the findings and recommendations amongst families with diabetes.

The NPDA has section 251 approval to collect patient identifiable data without explicit patient consent. The audit's aims are in the public interest, as the audit will help improve standards of paediatric diabetes care. Processing is permitted under the General Data Protection Regulation (GDPR) on the following legal bases:

• 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. This is justified through commissioning arrangements which link back to NHS England and the Welsh Government.

• Article 9 (2) (i) processing is necessary for reasons of public interest in the area of public health, such as protecting against serious cross-border threats to health or ensuring high standards of quality and safety of health care and of medicinal products or medical devices, on the basis of Union or Member State law which provides for suitable and specific measures to safeguard the rights and freedoms of the data subject, in particular professional secrecy. This is justified as the NPDA aims to drive improvements in the quality and safety of care and to improve outcomes for patients.

HQIP and NHS England both rely on the Article 6 (1) (e) legal basis under the GDPR. This is justified through commissioning arrangements which link back to NHS England and other national bodies with statutory responsibilities to improve quality of health care services.

HQIP rely on Article 9(2)(i) as the legal basis for processing under GDPR. This is justified as all projects aim to drive improvements in the quality and safety of care and to improve outcomes for patients.

NHS England rely on Article 9(2)(h) of the GDPR as the legal basis for processing. "Processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment or the management of health or social care systems and services on the basis of Union or Member State law or pursuant to contract with a health professional and subject to the conditions and safeguards referred to in paragraph 3". NHS England are responsible for provision of health and social care, and management of systems and compliance.

The core NPDA dataset includes information on key health checks recommended by NICE for children and young people with diabetes, and on the diabetes outcomes recorded for each. Data is submitted by all paediatric diabetes units (PDUs) in England and Wales, on all children and young people using their services, with data recorded from every patient visit.

Admissions data is also collected as part of the core audit. The completeness of these data submitted by PDUs is questionable however, and some clinics do not succeed in submitting any admissions data at all. In order to ensure accurate reporting of admissions the RCPCH links the core NPDA dataset with data from the HES and PEDW databases. Linking the datasets also enables identification of admissions trends associated with patient outcomes measured by the audit. The subsequent analysis at regional and unit level enables identification of admission trends, variation in admissions by unit and region, and helps inform quality improvement initiatives aimed at reducing avoidable diabetes-related admissions. The study team aim to incorporate reference costs of admissions into the analysis for the report, as it should be possible to model savings associated with fewer Diabetic Ketoacidosis (DKA) admissions if children and young people with Type 1 diabetes and high HbA1c are able to reduce their levels in line with NICE recommended targets. If potential savings are shown to be significant, this will provide evidence to support funding for interventions associated with reductions in HbA1c at patient or clinic level, including increasing support for use of, and access to, diabetes related technologies.

Since the last admissions report produced by NPDA, Diabetes UK have continued to promote their ‘4T’s campaign, which aims to raise awareness of the signs of the onset of Type 1 diabetes (excessive Thirst, needing the Toilet a lot, becoming Thinner, and being Tired). If these signs are missed, by patients or a GP, the child will likely be admitted with DKA. The previous admissions report showed that a quarter of all diagnoses were not picked up before the patient was in DKA. New analysis of DKA trends at diagnosis hopes to elucidate whether the campaign has had an impact in the years since the last report, or whether other initiatives are needed in addition.

The collection of patient identifiable information including NHS number was necessary to achieve the linkage, and so that the admissions data requested from HES could be linked to patient outcomes recorded within the core NPDA dataset. Identifiable information was requested to track patients throughout care pathways and to remove duplicate entries. Identifiable information was also requested to link with national datasets.

Five years’ worth of data (2015/16- 2019/20) are held in order to establish whether admission rates reported in previous NPDA publications (National Paediatric Diabetes Audit Report 2011-12: Part 2, 2014, National Paediatric Diabetes Audit Report 2012-15: Part 2, 2017) have improved or worsened over time, and whether there has been year on year progress towards fewer admissions.

There is no alternative source of admissions data for children and young people admitted to English hospitals for diabetes related complications other than the HES database. In order to minimise the data required, the NPDA requested only diabetes related admissions recorded against patients included within the audit. This cohort comprises admissions coded under the following diabetes related codes: all E10 (Insulin-dependent diabetes mellitus), E11 (Non-insulin-dependent diabetes mellitus), E13 (Other specified diabetes mellitus) and E14 (Unspecified diabetes mellitus) ICD10 subcodes. These admissions typically occur further to suboptimal diabetes management.

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data)”

The core NPDA dataset, submitted by paediatric diabetes units and collected by the NPDA project team at the Royal College of Paediatrics and Child Health (RCPCH), has been linked by NHS Digital to HES data relating to diabetes-related admissions recorded against the NHS numbers of the children and young people included in the audit over the time period specified. This comprises all children and young people being managed by paediatric diabetes teams in England and Wales, minus any who have opted out.

A cohort (approx. 30,000) has been supplied to NHS Digital (NHS Number, Date of Birth, Sex, Postcode), and HES data returned (with NHS Number and Date of Birth and StudyID).

After the data is received and merged into the core NPDA dataset by the RCPCH, the linked dataset is pseudonymised with the application of a pseudocode in place of the NHS number, and the date at the start of the audit year in place of Date of Birth, before commencement of analysis. Supply of identifiable data is required as the linkage is achieved by merging in HES data to the core NPDA dataset. This will enable analysis of risk factors for admission, as the NPDA dataset contains patient demographic information, and date of diabetes diagnosis, which enables analysis of admission at diagnosis trends. No attempt will be made to perform any additional linkages. The HES data is required to establish how many potentially avoidable diabetes related admissions to hospital happened over the five years amongst children and young people receiving care from a paediatric diabetes unit. The study team do not receive complete admissions data from Paediatric Diabetes units as part of their annual submission of data, so the HES data ensures the study will be capturing all admissions.

After the linked data was received, the NHS numbers were replaced by pseudocodes merged in from the NPDA pseudokey, and the Date of Births converted to age at beginning of each audit year. The pseudokey is a file kept containing just the NHS numbers, corresponding pseudocodes, and minimal demographic info.

Data processing occurs via RCPCH’s secure VPN by substantive employees of the Royal College of Paediatrics and Child Health who have received training in data protection and GDPR.

All data processed by RCPCH is stored on servers within RCPCH. Encrypted back up recovery services are provided by Syspro (a software company that builds Enterprise Resource Planning systems) who have ISO 2000-1: 2011 accreditation and use servers located within the LDex datacentre (a purpose build collocated data centre) to house the backed up encrypted data from RCPCH servers. Although LDex provide the physical storage space for the back-up hardware on behalf of Syspro, they do not have any access or any means to access NHS Digital data. Syspro hold all admin rights and utilise their own connectivity and software. RCPCH data (including NPDA data) is encrypted before it leaves RCPCH and the key is held by RCPCH and Syspro only.

There will be no data linkage undertaken with NHS Digital data provided under this agreement that is not already noted in the agreement.

Data will only be accessed and processed by substantive employees of RCPCH and will not be accessed or processed by any other third parties not mentioned in this agreement.

As a result of delays to the receipt of the HES Data requested, and delays in appointing a suitable analyst to complete the analysis and reporting described in this Agreement, the NPDA are seeking an extension to allow sufficient time to achieve projected outputs.

The requested data hopes to be used to develop a five year comparative report. As the number of hospital episodes per year can be low, a five year comparative report hopes to have sufficient data to provide insight into admission trends, which may support targeted initiatives to reduce admission rates in the future. There has been no progress on the analysis or draft of this report as the NPDA do not currently have an analyst employed to carry out this piece of work.

The national admissions report is one of the primary deliverables that the RCPCH is contracted to produce, in addition to annual core reports (national and unit level) on the care and outcomes received and achieved by children and young people with diabetes in England and Wales. Deliverables also include the biannual parent and patient experience measure (PREM) surveys reported at national and unit level, spotlight audits at national and unit level, and events including a national conference. Lay summaries of all national reports hope to be produced in hardcopy and animated form to help raise awareness of the findings and recommendations amongst families with diabetes.

The report hopes to be provided in online format to units, health commissioners and senior managers of trusts. The report is anticipated to be publicly available on the NPDA website (https://www.rcpch.ac.uk/work-we-do/quality-improvement-patient-safety/national-paediatric-diabetes-audit), and a short lay summary for patients and parents hopes to be produced. This may also feature on the RCPCH webpage (https://www.rcpch.ac.uk/) and publicised widely via social media (Twitter - @NPDA_RCPCH) with particular targeting of diabetes parent/patient forums.

Responsibility for realising benefits from the outputs is anticipated to lie with everyone involved in commissioning, managing and delivering paediatric diabetes care, as a coordinated response to admission trends identified and mitigation of specific risks of admission would be most effective, especially in hospitals and regions found to have higher admission rates.

Findings hope to be presented at NPDA own national conference, and likely at regional children and young people’s diabetes network meetings. A national report on the admissions data hopes to be produced for HQIP and NHS England and published on the website.

The target date for publication of the five year-report is October 2022.

Outputs will be aggregated with small numbers suppressed in line with the HES analysis guide.

The NPDA seeks to drive quality improvement through the continued year on year assessment of paediatric diabetes care and outcomes performance by specialist diabetes units, as measured against standards of diabetes care. By securing data from 100% of paediatric diabetes units in England and Wales, the NPDA may be able to make national recommendations to improve the care and outcomes of children with diabetes. Hospital, regional and national level benchmarking of patient care and outcomes supports local teams, hospital managers, regional paediatric diabetes network managers, commissioners, and policy makers to identify good practice and outcomes, and to understand where deficits exist so that they may be addressed at the appropriate level.

Comparisons hope to be made between admission rates within different regions, by country, by gender, ethnicity and age group, thus potentially providing a basis for targeted interventions or initiatives to reduce admissions.

Previous admissions reports produced by the NPDA have shown that children and young people with poorly managed diabetes indicated by higher HbA1c levels (a measure of average blood glucose) were at greater risk of admission with Diabetic Ketoacidosis (DKA). By incorporating reference costs of admissions into the analysis for the new five year report, it may be possible to model savings associated with fewer DKA admissions if children and young people with Type 1 diabetes and high HbA1c were able to reduce their levels in line with NICE recommended targets. If potential savings are shown to be significant, this may provide evidence to support funding for interventions associated with reductions in HbA1c at patient or clinic level, including increasing support for use of, and access to, diabetes related technologies.

A lay summary of the national report hopes to be produced for young people with diabetes and their families which will describe any service level and patient level risk factors for admission with a diabetes related complication identified within the report, as well as providing advice on how to avoid becoming admitted with one. It may also provide a basis for patients and their parents to advocate for better support in regions with disproportionately high admission rates.

There has been parent and public involvement at all stages of the NPDA. It was included at the commissioning stage, when the RCPCH was commissioned to deliver the audit, and to deliver an admission report as part of the contract. Since then, the NPDA have recruited parent representatives to sit on the Project Board and the dataset and methodology group, where they have been involved in deciding what analysis and reporting is prioritised. Parents have also been invited to recommendation generation workshops, at which findings from national reports have been considered and recommendations for subsequent actions to be taken by local paediatric diabetes teams, regional networks and commissioners are suggested. The NPDA plan to include the Families with Diabetes Network in the recommendation generation process further to the analysis of the admissions data here requested.

Since the last admissions report produced by the NPDA, Diabetes UK have continued to promote their ‘4T’s campaign, which aims to raise awareness of the signs of onset of Type 1 diabetes.

What are the 4 Ts?

Toilet - Going to the toilet a lot, bed wetting by a previously dry child or heavier nappies in babies

Thirsty - Being really thirsty and not being able to quench the thirst

Tired - Feeling more tired than usual

Thinner - Losing weight or looking thinner than usual

If these signs are missed, by parents or a GP, the child will likely be admitted with DKA. The previous admissions report showed that a quarter of all new diagnoses were not picked up before the patient was in DKA. New analysis of DKA trends at diagnosis hopes to elucidate whether the campaign has had an impact in the years since the last report, or whether other initiatives are needed in addition.

In summary, the dissemination is in the public interest as it may elucidate at clinic, regional, and national level where improvements can be made in admission rates amongst entire patient cohorts, or amongst patient groups with particular characteristics. Evidence of cost of potential savings associated with reduced admissions may provide new impetus to commissioners, paediatric diabetes teams, and parents, to work together to identify quality improvement priorities locally.

NHS Digital data supplied under NIC-252024 was previously used under another DARS agreement (DARS-NIC-34964). The NPDA team using that data were able to produce a definitive picture of the numbers and proportions of children and young people with diabetes being admitted for avoidable diabetes related reasons, and establish which patients were at greatest risk. This enabled clinicians, children with diabetes and their families to understand individual patient risks, and how they might be mitigated. The analysis showing that lower HbA1c (a blood measure of diabetes management) was associated with lower risk of admission, was used by commissioners when deciding how to fund diabetes related technologies associated with achieving lower HbA1c.

The follow up report will show whether there has been an improvement in admission rates since the previous report. As stated in section 5c no progress has been made on the follow-up report as yet due to delays in the receipt of HES data and delays in appointing a suitable analyst to complete the analysis and reporting described in this Agreement. There are therefore no additional yielded benefits to add to this Agreement.