Access to HDIS II/DAE (Prev NIC-308764) - University Hospitals of Derby and Burton NHS Foundation Trust

University Hospitals of Derby and Burton NHS Foundation Trust request permission to access the NHS Digital Portal (Data Access Environment) in order to process HES data on a continuous system access basis.

The purpose of the request is to use information available via the NHS Digital Portal primarily to study epidemiology of Acute Kidney Injury (AKI) in England. Data will also be used to provide information as a result of either hospital issuing a Black Alert for areas of concern in areas relating to Kidney disease. Reports would be created on an add hock basis for these specific requests and any outputs would be aggregated with small numbers suppressed in line with the HES Analysis Guide. Analysis will be presented at Team Meetings within various hospital departments to influence decision making.

Data will be used to improve patient health care pathways by adding and sharing descriptive analysis evidence internally that will feed into Quality Improvement Projects. Data accessed via the NHS Digital Portal will be used to perform:

1) Regular audits on local, regional and national AKI length of stay and mortality

2) Understand the epidemiology and determinants of emergency hospital admissions

Specifically, the objectives of the research into AKI are:

1) To study regional variation in acute kidney injury requiring dialysis (AKI-D) in England.

2) To evaluate factors affecting renal and patient outcome in acute kidney injury after medical conditions or procedures

3) To study long term patient and renal outcomes after dialysis requiring AKI

The data will help understand the factors affecting the increasing number of hospital admissions for AKI and the primary reason for admission. This may then involve setting up services to tackle commonly presenting conditions in primary care reducing the hospital burden. The data may also highlight the need for a particular service for recurring problems, like kidney stones. The hospital will then be able to set up a metabolic stone clinic, thus reducing the number of hospital admissions (if applicable)

To date there is a paucity of data on the incidence of AKI, and whether it is community or hospital-acquired. The reported prevalence of AKI from US data ranges from 1% (community-acquired) up to 7.1% (hospital-acquired) of all hospital admissions.

The population incidence of AKI from UK data ranges from 172 per million population (pmp) per year from early data up to 486-630 pmp/year from more recent series, again depending on definition. The incidence of AKI requiring renal replacement therapy (RRT) ranges from 22 pmp/year to 203 pmp/year.

An estimated 5–20% of critically ill patients experience an episode of AKI during the course of their illness and AKI receiving RRT (Renal replacement therapy) has been reported in 4·9% of all admissions to intensive-care units (ICU). Data from the Intensive Care National Audit Research Centre (ICNARC) suggests that AKI accounts for nearly 10 percent of all ICU bed days.

There are 4 studies from the United States, reporting that the incidence and case-fatality of AKI has decreased, but the health care system in the US is insurance based and the data used is from billing databases with their own limitations.

The data from the HES database (when generated into outputs) will allow lay people, the medical community and healthcare policy makers to appreciate the true burden and variation of this important disease. This is important because it is the first critical step in developing strategies to reduce the incidence of AKI as well as improve outcomes. As such this study is well aligned with initiatives undertaken by NHS England to better understand the burden of AKI in England with the goal of developing national initiatives to reduce the incidence and improve survival.

Hospital Episode Statistics Admitted Patient Care, Outpatients, Critical Care and A&E datasets with associated analytical tools will be made available via secure access to the NHS Digital Portal.

The University Hospitals of Derby and Burton NHS Foundation Trust will be the sole Data Controller and Processor. No other organisations are involved in the study. No other funders or commissioners are involved.

Access to the NHS Digital Portal will be purely for secondary analysis of pseudonymised data with no attempts to link to other datasets.

There is no flow of identifiable, confidential or sensitive information and as such an ethics review is not necessary. There is minimal risk of harm to the public as the dissemination is ultimately there to improve quality of care and patient outcomes across the hospital.

Data will not be used for commercial purposes, not provided in record level form to any third party, and not used for direct marketing.

University Hospitals of Derby and Burton NHS Foundation Trust's legal basis for processing personal data under GDPR is a function of a public task (by a public organisation) as set out in Article 6(1), point (e) (“necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller”) and Article 9(2), point (j) (“necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes”).

All organisations party to this agreement need to 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 NHS Digital Portal is a secure method giving access to datasets and associated analytical tools. It is accessed via a secure authentication method to named users. Users are only able to access the datasets detailed within this agreement. Users log onto the portal and are presented with analysis tools which allow them to access the relevant data sets and reference data tables so that they can return appropriate descriptions to the coded data.

The access and use of the system is fully auditable and all users must comply with the use of the data as specified in this agreement. Users are able to produce tabulations, aggregations, reports, charts, graphs and statistical outputs for viewing on screen. They may request these to be downloaded with small numbers suppressed in line with the HES Analysis Guide.

The data will be analysed for basic descriptive statistic and outputs will be in the form of tables and charts.

The data will not be accessed from outside the UK.

Only direct employees of University Hospitals of Derby and Burton NHS Foundation Trust will have access to the data. Only the named user, the Lead Analyst will have access to the system itself.

Only aggregated data will be downloaded.

No linkage is being requested as part of this agreement.

The data will not be matched to publicly available data.

It is not possible to re-identify anyone using this data.

Data is only available through secure access to the NHS Digital Portal.

No patient identifiable data will be used for analysis and publishing.

All outputs will be aggregated with small number suppression applied in line with the HES Analysis Guide.

Users are able to produce outputs from the system in a number of formats. The system has the ability to be able to produce small row count extracts for local analysis in Excel or other local analysis software. Users are also able to produce tabulations, aggregations, reports, charts, graphs and statistical outputs for viewing on screen or export to a local system. Users are not permitted to link data extracted from the system to any other data items which make the data identifiable.

Outputs will be in the form of queries and results generated from the system.

Analysis is predicted to take place to focus on highlighted quality improvement projects.

Publications in journals are not anticipated at this time - results will be presented to relevant professionals in the Trust. Results will be presented at local and regional levels

The descriptive statistics run from the NHS Digital Portal are for in house use and will be presented at team meetings. They will also be presented to surgeons involved in divisional meetings, trust meetings and quality improvement meetings. The aim is to share as much information as possible with relevant medical professionals within Burton and Derby Hospital Trusts - all at aggregated level with small numbers suppressed in line with the HES analysis guide.

The results of the analysis will be used for service improvement, bench marking against national standards, quality improvement work. The results will be presented at local and regional meetings in the form of reports and presentations. Posters may also be generated to share with relevant staff. The communication strategy for communicating results from the Quality Improvement Plan includes tweets, newsletter and the Trust's intranet.

The analysis will take place during the time frame of the Data Sharing Agreement.

The outputs will also be useful to policy makers and commissioners.

All outputs shared will be of aggregated data with small numbers suppressed in line with the HES Analysis Guide.

There will be no attempt to create tools or advanced algorithms/technologies with the data.

The use of the NHS Digital Portal means that users and organisations have a secure access, remotely hosted software application for the analysis of HES data. The system is hosted and audited by NHS Digital meaning that large transfers of data to on-site servers is reduced and the NHS Digital has the ability to audit the use and access to the data. The provision of a tool enables that rapid analysis can be performed to the latest version of the data where speedy analysis is required to react to either local public health, commissioning or research requirements.

Access to HES data via the NHS Digital Portal (DAE) will help to produce data for multiple Quality Improvement Projects. It will help to continue the important work of improving the length of stay and mortality in AKI patients. In addition, the data will help to understand the reason for hospital crowding in the form of day of the week, area of referrals to A&E and understanding the reasons for A&E crowding. The outputs from the data will help to develop a business case for AKI nurses at two hospitals and subsequent audits from HES data will confirm the appropriateness of investment in resources. The data will also help to develop future services which have been lacking in the region, for example - A medical renal stone clinic.

Previous HDIS access (now NHS Digital Portal access) allowed the licensed user to draw down record level data to carry out service evaluation for the University Hospital of Derby and Burton NHS Foundation Trust. This provided an understanding of yearly change in length of stay, mortality for certain group of diseases as identified by ICD 10 codes.

Example - 1) The access to HDIS has allowed the Trust to understand the impact of heart failure services on length of stay and readmission rates at University Hospitals of Derby and Burton NHS Foundation Trust.

2) The licensed user evaluated the number of AKI admissions in Queens Hospital Burton as recognised by coding and by NHS England's AKI algorithm to understand the specificity of the coding. This has led to important financial saving to the Trust by implementing "improving coding" in Queens Hospital, Burton.

3) The same audit also evaluated impact of not recognising AKI and mortality which was higher in Queens Hospital, Burton and has resulted in measures to improve AKI recognition.

There were huge benefits with this research as mentioned below. The use of HES data for AKI epidemiology resulted in clearer picture of the disease burden in England. The health care system is different in each country and although the mortality for AKI has decreased in US, this is not the case for England. The previously provided data highlighted that mortality for dialysis requiring AKI (AKI-D) remains unchanged in England over the last 15-years and urgent action needs to be taken to tackle this.

The data shared previously was presented at the World Congress of Nephrology 2015 in Cape Town, European Renal Association meeting in London 2015 and an oral presentation in the European Renal Association meeting in London 2015.

1) The epidemiology of hospitalised acute kidney injury not requiring dialysis in England from 1998 to 2013: retrospective analysis of hospital episode statistics. Kolhe NV, Muirhead AW, Wilkes SR, Fluck RJ, Taal MW. Int J Clin Pract. 2016 Jan 22. doi: 10.1111/ijcp.12774. [Epub ahead of print]

2. National trends in acute kidney injury requiring dialysis in England between 1998 and 2013. Kolhe NV, Muirhead AW, Wilkes SR, Fluck RJ, Taal MW. Kidney Int. 2015 Nov;88(5):1161-9. doi: 10.1038/ki.2015.234. Epub 2015 Jul 29

The previous data has highlighted that the population incidence of both AKI & AKI-D has increased more than 12 folds in England. This published research has led to further projects by UK Renal Registry to collect dialysis data for AKI prospectively.

The outputs from the previous iteration of the agreement resulted in the following:

1) First description of epidemiology of both dialysis and non-dialysis requiring AKI.

2) First description of regional variation of AKI in England.

3) First description of effect of weekend on AKI mortality in England.

4) Effect of nephrology services on AKI mortality in centres with no nephrology services.

5) Quality Improvement Projects which demonstrated increased mortality and length of stay in Burton Hospital and subsequent merger of Derby and Burton Trust. The patient-benefit case for merger used the data from HES on the NHS Digital Portal.

6) Improved mortality and reduction in Length of Stay at Burton hospital with improved renal services.