NHS Digital Data Release Register - reformatted

Royal College Of Paediatrics & Child Health (rcpch) projects

3 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

Project 1 — DARS-NIC-34964-S2V0M

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y ()

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Non Sensitive

When:2016.12 — 2017.02.

Access method: One-Off

Data-controller type:

Sublicensing allowed:


  1. Hospital Episode Statistics Admitted Patient Care


The primary aims of the National Paediatric Diabetes Audit (NDPA) are to facilitate health providers and commissioners to measure and improve quality of care, and to contribute to the continuing improvement of outcomes for children and young people with diabetes and their families.

Overarching priorities are to:

• consult and engage with clinicians to enable collection of a more clinically meaningful and useful dataset
• to increase unit participation rate by using a regional network approach to data collection
• to support clinicians in developing local action plans to use their audit data to improve quality of care and patient outcomes
• to capture the patient experience and enable units to respond and improve, based on feedback
• to enable patients to be followed throughout their care journey and enable audit data to be linked to the National Paediatric Diabetes register under development by the Royal College of Paediatrics and Child Health (RCPCH)
• to maximise the use and availability of audit data for further analysis
• to work with the suppliers of the National Diabetes Audit (adult) to jointly capture information and outcomes throughout a child’s transition from paediatric to adult care.

Reports previously provided from this audit have had a significant impact on the standards and practices affecting those suffering with Diabetes.

Data collected for audit is used for
• Providing profiles for individual hospitals in comparison to other hospitals, and to the country as a whole;
• Providing profiles for NHS Trusts comprising of one or more hospitals and comparing them to other trusts and to the country as a whole;
• Providing profiles for the 10 geographical regions in England, based on the regional networks, and Wales as a whole, comparing networks to one another and to each country as a whole;
• Providing a general country profile for England and for Wales.

Audit data has also previously been linked to HES and Patient Episode Database for Wales (PEDW) data to enable analysis and reporting of emergency hospital admissions where the primary diagnosis is related to diabetes in children and young people cared for in Paediatric Diabetes Units (PDUs) in England and Wales (National Paediatric Diabetes Audit Report 2011-12: Part 2, 2014).

The data requested in this application will be linked to data collected at audit and used to produce a similar report covering a three-year period showing whether improvements in paediatric diabetes care found in recent years are mirrored by reductions in emergency admissions for diabetes-related complications.

The previous complications report noted that one in ten admissions to hospital is as a consequence of a hypoglycaemic episode. Since most hypoglycaemia is self-managed by the patient and/or their family at home, it is concerning that there is this number of admissions with this complication. Time trends for admissions with hypoglycaemia have yet to be established, and the data requested in this application will help provide a basis for their analysis.

Expected Benefits:

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 acknowledged standards of diabetes care for the previous 12 years.
By securing data from 100% of paediatric diabetes units in England and Wales, the NPDA is able to make national recommendations to improve the care and outcomes of children with diabetes.

For the last five years the audit has shown steady year on year improvements in adherence to care processes and in measured outcomes. Completion rates of all seven key health checks has improved nationally, from 6.7% in 2011-12, 12.1% in 2012-13, 16.1% in 2013-14, to 25.4% in 2014-15. The national HbA1C level have decreased year on year from to 71 mmol/mol in 2011-12 to 65.5 mmol/mol in 2015/15. The RCPH would expect the release of a 3 year comparative HES data report in February 2017 to provide essential insight into the impact of these improvements on the admission rates of children and young people with diabetes.

Outputs for this year’s HES report will more effectively serve children with diabetes than the previous report, by allowing comparison of causes, length and care during hospital admissions over a three year period, and to support units to get closer to managing levels of ketoacidosis below levels recommended by current standards. Comparisons will be made between admission rates within different regions, by country, by gender, ethnicity and age group, thus providing a basis for targeted interventions or initiatives to reduce admissions. It will also provide a basis for patients and their parents to advocate for better support in regions with disproportionately high admission rates.

The audit reports on the prevalence and incidence of diabetes in children and young people receiving care from a Paediatric Diabetes Unit (PDU) in England and Wales, and information on the completion rate of essential healthcare checks and clinical outcomes are utilised to drive the Quality of Care agenda. Reporting at clinic, regional, and CCGs levels enables the detection of outlier clinics, regions, and CCGs within which patients have received significantly lower percentages of the recommended processes or who have significantly worse HbA1C levels (the key indicator of diabetes control). Identification of such outliers focusses attention on the practices within these clinics and regions, so that reasons for outlier status can be identified and efforts made to improve care. Annual audit enables benchmarking of care process provision and diabetes outcomes, so that improvements in care can be measured and benchmarked year on year. Even prior to the obligation for English Units to participate in the audit in order to receive funding via the Best Practice Tariff, the audit had a participation rate of 100% of eligible units, as clinicians could see the benefits of the measurement and benchmarking it enables.

Receiving HES data relating to diabetes related admissions enables the RCPCH to monitor whether the improvements in national diabetes outcomes achieved over the last few years have resulted in a lower prevalence of admissions due to complications. Breaking down the reasons for admission, and examining whether certain patient groups are admitted more regularly than others will help focus national efforts to reduce the risks of patients being admitted.
The RCPCH currently collect data on admissions from diabetes complications from their participating units, but there have been historical doubts about the relative completeness of both this data and HES data. If comparison of both datasets reveals that the HES data can provide a reliable picture of national diabetes related admissions, the RCPCH should be able to remove their own admission questions from the current dataset, and thus reduce the audit burden on participating units.


The requested data will be used to develop a three year comparative report which will be published alongside the core NPDA report. A previous version of the report is available to view and download from the NPDA website. As the number of hospital episodes per year can be low, a three year comparative report would be the first to have sufficient data to provide insight into admission trends. which could support targeted initiatives to reduce admission rates in the future.

The report will be provided in online format to health commissioners and Senior managers of trusts. It would also be publically available on the NPDA website, and a short lay summary for patients and parents will be produced. This will also feature on the RCPCH webpage and publicised widely via social media with particular targeting of diabetes parent/patient forums.

The target date for publication of a three-year report output is February 2017.

The data will be broken down to show outcomes for different patient groups as per the last report, e.g. by age group and gender (http://www.rcpch.ac.uk/system/files/protected/page/NPDA%202011-12%20compreport.v5%20FINAL.pdf).

A patient/carer report summarising the findings of the main admissions and complications report will also be produced.

No additional separate publications are specifically planned, but the RCPCH intend to summarise the findings for submission to an academic journal.

Any outputs containing data will only include data that is aggregated, with small numbers suppressed in line with the HES Analysis Guide.


The RCPCH makes a data request to the HSCIC for individual patient records based on the NHS number.
HSCIC then extracts the associated data from the cohort and returns the raw data to RCPCH’s secure server.
Once supplied, authorised RCPCH personnel then convert the NHS numbers to the pseudokeys used to disguise the NHS numbers collected routinely by the audit, to enable linkage. The RCPCH will apply the same filters as used for previous years in order to continue building the large base of comparative data, including: data of admission date of discharge, method of discharge, diagnosis codes, number of intensive care bed days, etc.

A parallel application and process for PEDW data will be made to ensure inclusion of all English and Welsh admissions. No data supplied by NHS Digital will go to the PEDW.

The RCPCH will then clean the data and provide secure access to the pseudonymised, filtered data to a project statistician for data analysis. Secure access will be provided to a single folder holding the non-identifiable data. Only employees of the RCPCH will be able to access the data.

The analyst will analyse the cleaned data based on all fields except the hidden, patient identifiable information.
Once analysed, a draft interpretation along with tables and charts is created by the analyst for development by the lead analyst and report writing team.

Although HQIP may approve the sharing of pseudonymised NPDA data for the purpose of academic research, this is not permitted for any HES data under this application/agreement. Any change to this would require an amended application/agreement with NHS Digital.