NHS Digital Data Release Register - reformatted

University of Leicester

Project 1 — DARS-NIC-120105-F0K2L

Opt outs honoured: No - data flow is not identifiable (Section 251)

Sensitive: Non Sensitive

When: 2019/01 — 2019/01.

Repeats: One-Off

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii)

Categories: Anonymised - ICO code compliant

Datasets:

  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Accident and Emergency
  • HES:Civil Registration (Deaths) bridge

Objectives:

Critically ill children who are admitted to district general hospitals can require specialist transport to a paediatric intensive care unit (PICU). There is considerable variation in the care provided to critically ill children prior to admission to paediatric intensive care. It is unclear whether the differences in timeliness of access to paediatric intensive care, and care delivered during stabilisation and transport by specialist transport teams, matter in terms of clinical outcomes and patient experience. This lack of scientific evidence has led over the years to the evolution of different models of paediatric transport provision, the development of national standards based on expert opinion rather than scientific evidence and has contributed to the lack of progress in improving care at the crucial interface between secondary and tertiary paediatric care. The objective of the DEPICT (Differences in access to Emergency Paediatric Intensive Care and care during Transport) study is to study the association between timeliness of access to paediatric intensive care and 30-day mortality. The University of Leicester requires pseudonymised linked data for use in the quantitative analysis work stream of the DEPICT Study (IRAS ID: 218569). The DEPICT Study was instigated and is led by the Chief Investigator based at Great Ormond Street Hospital. Great Ormond Street Hospital hold the contract with the Department of Health for the NIHR funding for the DEPICT study. The study has four workstreams (quantitative analysis, qualitative and questionnaires study, health economic evaluation and mathematical modelling). Great Ormond Street Hospital have a collaboration agreement in place with all the various work stream lead centres including the University of Leicester (who lead Work Stream A -data linkage study), under the lead professor's leadership. This agreement relates only to the quantitative analysis workstream, which is led by the lead professor based at the University of Leicester. For this agreement Great Ormond Street and the University of Leicester are joint data controllers. Great Ormond Street Hospital in their role as lead for their study, and the University of Leicester in their role as lead for Workstream A. As Sponsor of the study, Great Ormond Street Hospital, through the Chief Investigator, have a responsibility for the conduct of the entire DEPICT study including Work stream A. The University of Leicester are essentially carrying out the data analysis of the linked data set, therefore will decide how the data is analysed. They will receive the study data and store it. Great Ormond Street Hospital will not receive or have access any data that has been received from NHS Digital. To undertake the analysis specified in the quantitative workstream, the University of Leicester will have access to pseudonymised linked data. The sources of data are: 1) Paediatric Intensive Care Audit Network (PICANet) audit data from the University of Leeds. This audit is commissioned by the Healthcare Quality Improvement Partnership (HQIP) and University of Leeds is a data processor for the audit data. There has and will not be any involvement from University of Leeds or HQIP in the design or performance of the DEPICT study, in the study itself or this agreement. 2) Case Mix Programme (CMP) audit data from Intensive Care National Audit and Research Centre (ICNARC). There has and will not be any involvement from ICNARC in the design of the DEPICT study, in the study itself or this agreement. 3) Hospital Episode Statistics from NHS Digital. 4) Office of National Statistics mortality data from NHS Digital. 5) Patient Episode Database for Wales (PEDW) data from NHS Wales Informatics Service (NWIS). For both the audit datasets (PICANet and CMP), the University of Leicester approached HQIP and ICNARC to access and process their audit data for the purpose of Workstream A of this study, and this access has been agreed. Neither HQIP, ICNARC nor the University of Leeds have had or will have any further involvement in this study and, therefore, play no role in the design or performance of the project, and do not have access to any of the data to be disseminated by NHS Digital under this agreement. They will, however, receive study IDs only from the University of Leicester. The legal basis for dissemination: is: - Mortality data: Statistics & Registration Service Act S42(4A)(A) - Dissemination of data: Health and Social Care Act - 261(1) 261 (2)(b)(ii). The University of Leicester want NHS Digital to identify common records in the two audit datasets (PICANet and CMP) and link PICANet identifiers to HES and mortality datasets. Where common CMP records have been identified, the CMP unique identifier will be added to that record also. The University of Leicester will be the only organisation to access the record level data supplied from NHS Digital, as this is where the statistical team for the DEPICT Workstream A study are based. No other organisations will have access to the data received from NHS Digital. The University of Leicester is part of the DEPICT study collaboration and is leading the quantitative data analysis workstream. The DEPICT study is funded by the NIHR HS&DR programme (ref: 15/136/45). The DEPICT Study has three main aims: 1) Understand whether and how a) clinical outcomes and b) experience of critically ill children (and families) transported to PICU are affected by national variations in timeliness of access to care and care provided by transport teams before PICU admission. 2) Study the relative cost effectiveness of the current transport team and evaluate alternative methods of service delivery. 3) Provide evidence for the development of future clinical standards. The objective of the DEPICT study (see Aim 1a) is to investigate how the clinical outcomes of critically ill children who are transported to paediatric intensive care are affected by national variations in timeliness of access to intensive care. The primary outcome of interest is 30-day mortality and the secondary outcomes are: mortality in intensive care, at 90 days and within a year of admission; length of stay; resource use; number of hospital admissions and days in hospital in the 12 months following admission. In order to achieve these outcomes, the University of Leicester require linkage of PICANet audit data to HES and mortality data and the common records between PICANet and CMP to be flagged; this is so the outcomes of paediatric patients seen in both a PICU and other specialist intensive care units as part of their care can be analysed and a fuller picture of the cohort obtained. Under this agreement, the only organisation permitted to access and process the data provided by NHS Digital is University of Leicester.

Expected Benefits:

The DEPICT Study addresses an important clinical problem related to the care of acutely ill children in the NHS. The study will provide important information about the differences which may exist between the different paediatric transport services and the outcomes experienced by children. This is particularly important since current national standards from the Paediatric Intensive Care Society (PICS) are expert consensus derived rather than being evidence based. The main areas of uncertainty addressed by the DEPICT study are: 1. Provision of early, high-quality acute care has been shown to improve clinical outcomes in specific diseases such as paediatric sepsis and head trauma but it is unclear how these findings apply to the vast majority of critically ill children who require stabilisation and transport to a PICU. We will examine whether and how timeliness of access to paediatric intensive care and care delivered during acute stabilisation and transport affect clinical outcomes of critically ill or injured children with a range of diagnoses and pre-existing medical conditions, so that findings can be generalised to all critically ill children. 2. Centralisation of specialist acute care has occurred in several NHS services such as stroke, trauma, and specialist paediatrics. The findings from our research can provide evidence that can be generalised to evaluate other such centralisations. This is especially relevant to questions related to the trade-off between timeliness of access to acute care and provision of high quality cost effective specialist care. 3. Evidence is urgently required to understand whether and how delays in access to paediatric intensive care and variations in the quality of care provided during acute stabilisation and transport affect clinical outcomes. This study will provide definitive outcome information about critically ill children who receive specialist transport to paediatric intensive care. Development of the transport services and their related PICS standards of care have been driven by expert opinion but these have lacked scientific evidence. It will allow different transport services to compare their service with other services in the country, whilst accounting for the differences in populations and sickness of the children they transport, and will identify inequalities in access and timing of care. The DEPICT study will generate the high-quality evidence necessary to guide the development of future standards of care for the transport of critically ill children and inform decisions about the associated national policy. This work will be completed by the conclusion of the study in 2022.

Outputs:

The results of the study will be disseminated actively and extensively. The research team has strong links with (a) the PICU community via the Paediatric Intensive Care Society (PICS), PICS Study Group (PICS-SG), and the NIHR CRN: Children Clinical Studies Group (CSG) in Anaesthesia, Intensive Care and Cardiology; (b) the PICU Transport community through the PICS Acute Transport Group; (c) the Healthcare Quality Improvement Partnership national audit programme through the Paediatric Intensive Care Audit Network (PICANet) and Intensive Care National Audit and Research Centre (ICNARC) Case Mix Programme; and (d) NHS England. The DEPICT Study team plan to write six peer-reviewed publications related to the study aims. A recent paper describing the background to the DEPICT study was published in Paediatric Critical Care Medicine (Feb 2018). An peer-reviewed publication describing the DEPICT study’s initial findings will be submitted within 12 to 18 months of beginning the work. The intention is to publish the findings in high-impact journals and these will be made open-access. A final report overviewing the entire project will be published in the National Institute for Health Research (NIHR) Health Services and Delivery Research journal (funders of this research) by the end of the study (May 2020). CLINICIANS AND ACADEMICS: Clinicians in the study steering group will be drawn from all transport services in the UK, and will ensure wide dissemination of the results to frontline clinicians. The findings from the work will be presented at national and international conferences, potentially including the Annual Conference of the Royal College of Paediatrics and Child Health, the World Congress of Paediatric Intensive Care, the PICANet Annual Meeting, the Society of Critical Care Medicine Annual Congress, PICS Annual Scientific Meeting, American Association of Paediatrics Conference, the European Society of Paediatric and Neonatal Intensive Care, and British Association of Critical Care Nurses (BACCN). Dissemination at conferences will occur throughout the course of the DEPICT study (2019-2022). POLICY MAKERS: Recommendations for clinical guidelines arising out of the research will be published and disseminated to professional societies concerned with the care of children presenting with acute illness, including PICS and the Royal College of Paediatrics and Child Health. Our strong links with service managers and NHS commissioners will allow our findings to be disseminated to national policy makers, especially through the PIC Clinical Reference Group. Presentation slides will be prepared for use by the study team or others in disseminating the research findings. The timescale for this will also be throughout the course of the DEPICT study (2019-2022). PUBLIC: The results of the study will be disseminated to patients and their families, facilitated by the co-applicants, members of the research team who have links with PICS and the NIHR CSG, and via The PICANet Families Group who we have liaised with already. Findings will be made available via the DEPICT Study website (https://depict-study.org.uk/) which will make all results publicly available. These will also be promoted via social media (Twitter @DEPICT_Study). We will ensure that lay summaries are provided (reviewed in collaboration with parents involved in this research). Where appropriate, results will be promoted as press releases. (2019-2022). Outputs will contain only aggregate level data with small numbers suppressed in line with HES analysis guide

Processing:

The data flows are as follows: 1) Data flows to NHS Digital University of Leeds (PICANet) and ICNARC (CMP) will each securely transfer a file to the NHS Digital Data Access Request Service (DARS). These files will contain person-identifiable information (NHS Number, sex, post code, date of birth) and unique study identifiers (PICANet: DEPICT Study Number; CMP: CMP identifier) required to perform the data linkage. 2) NHS Digital will identify common records between PICANet data and CMP data 3) Data flows from NHS Digital - NHS Digital will supply a list of the study identifiers common to PICANet and CMP to University of Leicester - NHS Digital will provide HES data for all individuals in the PICANet cohort to the University of Leicester. The unique study identifiers (DEPICT study number and CMP identifier, where applicable) will be appended to the end of every episode record provided to the University of Leicester. - Mortality data for all individuals in the PICANet cohort will be provided to the University of Leicester. The unique study identifiers (DEPICT study number and CMP identifier, where applicable) will be appended to the end of every episode record provided to the University of Leicester. 4) Data flow from University of Leicester University of Leicester will securely transfer DEPICT study numbers and the unique CMP study identifiers for the records that were identified as been in common by NHS Digital to University of Leeds and ICNARC respectively. No HES or mortality data or any other personal identifiable data will be transferred. This information is shared so that clinical data for the records in common can be securely transferred from both PICANet and ICNARC to the University of Leicester for inclusion in their analysis. 5) Data flow from University of Leeds (PICANet) and ICNARC (CMP) University of Leeds (PICANet) and ICNARC will provide clinical data from their respective audits for the specific DEPICT and CMP records in common identified by NHS Digital to the University of Leicester by means of secure transfer. No personal identifiers will be transferred. All statistical analyses will be undertaken at the University of Leicester. The complete study dataset will only be accessed by two individuals employed by the University of Leicester for the statistical analyses. 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 i.e.: employees, agents and contractors of the Data Recipient who may have access to that data). The datasets required by the DEPICT Study team from NHS Digital are mortality and HES data. Data will be required from 2012/13 to 2017/18 to allow investigation of mortality and details about re-admission to A&E or hospital up to one year after the initial admission to paediatric intensive care. Data is only required on individuals aged <19 years to follow up children who required paediatric intensive care. There will be no requirement nor attempt to re-identify individuals from the data. National data is required to allow comparison of the different specialist transport services across the country. The results of all analyses will be published in aggregate form, with small numbers suppressed in line with HES guidance. No identifiable data will be held by the University of Leicester; therefore, no identifiable data will be released. Linked study data provided by NHS Digital will be used by the Workstream A team at the University of Leicester to achieve the primary and secondary study aims, i.e. investigate if differences exist in PICU mortality, or at 30 days, 90 days or one-year post-admission or if differences exist in re-admission to hospital and subsequent care in hospital following discharge. The DEPICT Study has the relevant Research Ethics and Section 251 approvals. Under this agreement, the only organisation permitted to access and process the data provided by NHS Digital is University of Leicester’. There will be no data linkage undertaken with NHS Digital data provided under this agreement other than that which is specified.


Project 2 — DARS-NIC-148437-C9YSC

Opt outs honoured: N

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2017/02.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Cohort Event Notification Report

Objectives:

This study aims to find out more about abdominal aortic aneurysms (AAA). This is a condition where the main artery in the body swells up and there is a risk of it bursting as a result. This kills approximately 10,000 people in England and Wales per year. These AAA can be found when they are small but it they get bigger there is no treatment for them other than high-risk surgery. Recently, a national screening programme has been started for AAA and through this programme, patients with AAA and those found not to have AAA will be recruited into this study. Study participants will have blood and urine samples taken at several time points as well being asked to fill in questionnaires about how they feel and their general health. Long-term follow up of the participants through the data retrieved from the MRIS will be used to determine mortality rates and causes in the study participants.


Project 3 — DARS-NIC-347200-H9G0Q

Opt outs honoured: N

Sensitive: Sensitive, and Non Sensitive

When: 2016/04 (or before) — 2016/08.

Repeats: Ongoing

Legal basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Categories: Identifiable

Datasets:

  • MRIS - Cause of Death Report
  • MRIS - Flagging Current Status Report

Objectives:

Researchers from the National Institute for Health Research (NIHR) Diet, Lifestyle and Physical Activity Biomedical Research Unit are investigating the association of objectively measured levels of physical activity and sedentary behaviour with the risk of all-cause and disease-specific mortality. University of Leicester is requesting ONS-mortality data for its ‘Walking Away from Type 2 Diabetes Study’ to be used to answer this question. The ‘Walking Away from Type 2 Diabetes’ was conducted by the Diabetes Research Centre, University of Leicester. In total 833 participants were recruited to the study from January 2010 to January 2011. Of these, 719 gave consent for their future health status to be accessed. University of Leicester is seeking ONS-mortality linkage for these 719 individuals. Data will not be shared with a third party and will be stored on secure servers controlled by the University of Leicester

Expected Benefits:

Over recent years sedentary behavior, conceptualised as any non-exercise sitting, has gained increasing interest as a distinct health behaviour that acts as an important determinant of mortality and mortality independently to MVPA. This has initiated research activity and public health attention on the possible benefits of displacing time in sedentary behaviour for time in light-intensity physical activity as an additional target to traditional lifestyle interventions focused on the promotion of MVPA. However, further research is needed with morbidity and mortality outcomes and objective measures of sedentary behaviour to adequately quantify the distinctive association of sedentary behaviour with health. Data generated by this study will help establish the strength of the association between sedentary behaviour and mortality risk and whether this relationship is fully independent of habitual physical activity levels. The research has been commissioned by the NIHR Leicester-Loughborough Diet, Lifestyle and Physical Activity Biomedical Research Unit and the results will be feed back to NIHR through the process of annual reporting. This analysis will also inform NICE guidance and guidance from other national/international health care organisations in the future. NICE have already held a Topic Advisory Workshop on sedentary behaviour and are likely to require robust evidence with which to form guidance specific to sedentary behaviour in the near future. Once this research is in progress, University of Leicester will contact the Chairperson of all relevant NICE committees (related to physical activity, sedentary behaviour or diabetes prevention) to make them aware of this project. University of Leicester will also seek to present any finding as expert testimony. This research will also inform lifestyle interventionists of the importance of targeting sedentary behaviour within the context of lifestyle intervention.”

Outputs:

The results of the analyses highlighted above will be disseminated through presentations at international topic-relevant conferences and publication in peer-reviewed academic medical journals. University of Leicester anticipate that results will be ready for dissemination by December 2016. Findings will be presented at the meetings organised by the “International Society for Behavioral Nutrition and Physical Activity (annual)” or the “International Congress on Physical Activity and Public Health (every two years)”. Results will be published in a peer-reviewed medical journal. In the first instance University of Leicester will target a high impact journal such the Lancet or Journal of the America Medical Association. The exact journal will be dependant on the peer-review process and journal acceptance. The level of output data will be statistical in nature, i.e. the risk of all-cause mortality was reduced by XX% per every 30 minute difference in moderate-intensity physical activity. Individual record level data will not be published or shared with a third party.

Processing:

University of Leicester want to test the hypothesis that objectively measured daily sedentary time and time in moderate-to-vigorous physical activity (MVPA) are both independently associated with all-cause and cardiovascular mortality. The ‘Walking Away from Type 2 Diabetes’ dataset for which linkage to ONS-mortality linkage is being requested includes levels of objectively measured average daily time spent sedentary (i.e. sitting) and in MVPA. Objective measurements were obtained through accelerometer technology. The ‘Walking Away from Type 2 Diabetes’ study received a favourable NHS ethical review and patients were given the option of consenting to having their future health status accessed. Only those that explicitly provided this consent will be included in the dataset sent for linkage. Cox proportional hazard models will assess the independent associations of baseline sedentary time and MVPA time with all-cause and cardiovascular mortality that occurred from baseline to follow-up (most current ONS-mortality data). Assumptions of linearity will be assessed. Areas of non-linearity likely at the extremes of sedentary behaviour will be analysed using spline techniques. Data will be adjusted for accelerometer wear time and measured/clinical/anthropometric/demographic confounders. The hazard ratios obtained from the above analysis will be combined with those generated from other studies from which the outputs are accessible to University of Leicester using standard meta-analytic methods in order to increase the power and generalizability of this project’s findings. However, University of Leicester will not merge or link this data with other datasets or allow access to third parties. All analysis will be conducted within the Diabetes Research Centre, University of Leicester.


Project 4 — DARS-NIC-370641-K0J0T

Opt outs honoured: Y

Sensitive: Non Sensitive, and Sensitive

When: 2017/03 — 2017/05.

Repeats: One-Off

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

Categories: Anonymised - ICO code compliant, Identifiable

Datasets:

  • Hospital Episode Statistics Accident and Emergency
  • Hospital Episode Statistics Admitted Patient Care
  • Hospital Episode Statistics Critical Care
  • Hospital Episode Statistics Outpatients
  • Office for National Statistics Mortality Data

Objectives:

Community screening for Abdominal Aortic Aneurysm (AAA) by ultrasound has been proven to reduce AAA related deaths and has recently been adopted by the NHS with national coverage established in 2013 and from this year onwards, over 300,000 men will be screened for AAA every year with approximately 4000 AAA detected. Community screening for AAA in England is carried out by the NHS AAA Screening Programme (NAAASP), part of Public Health England (PHE). NAAASP invites all men for AAA screening in the year of their 65th birthday. Screening is carried out by ultrasound and is both clinically effective and cost effective. NAAASP records the infra-renal aortic diameter for all men who attend for screening. Men found to have an AAA (aortic diameter >30mm) are either entered into a surveillance programme that is also run by NAAASP (AAA 30mm to 54mm) or referred to a vascular surgeon for consideration of surgical repair (AAA >54mm). In order to ensure cost-efficiency. The incidence of AAA is falling in western populations and this raises the question of whether AAA screening will remain effective in the long-term. In addition, the NHS AAA Screening Programme (NAAASP), who has become part of Public Health England (PHE), will detect a large number of patients with small AAA that will require regular surveillance imaging. The University of Leicester propose to determine the outcomes of men being invited for screening by the NAAASP and investigate clinical factors associated with outcomes by linking a single-year cohort of men invited for AAA screening by NAAASP with multiple years of Hospital Episode Statistics (HES) data via the Health and Social Care Information Centre (HSCIC). In this project NAAASP will control all personal data and process this into a dataset that contains both pseudonymised and study identifiers. The University of Leicester will receive a dataset from NAAASP detailing the outcomes of screening. NAAASP will send HSCIC dataset comprising a list of NHS numbers and the study identifiers. HSCIC will use this dataset to identify the HES/HES-ONS records for the men in the dataset and provide this data to the University of Leicester with only the study identifiers. The University of Leicester will link the NAAASP data and the HES/HES-ONS data and perform analysis. The outcomes of patients attending the NAAASP are partially unknown. Patients with AAA are followed up by NAAASP through AAA surveillance and the outcomes of patients referred for surgery are recorded. The cause of death in patients with AAA who die whilst under surveillance is not automatically made available to NAAASP. In addition, those screened and found not to have AAA are discharged from NAAASP follow-up and some patients do not attend for screening. There is some evidence that patients with a normal aortic diameter at age 65 may develop an AAA later in life and therefore be at risk of AAA related death. Also, NAAASP utilises a technique for the assessment of aortic diameter that results in a smaller measurement when compared to other methods and discharges patients if their aorta is below a 3.0cm threshold. This technique may therefore result in some patients being discharged by NAAASP who may be entered into surveillance in other screening programmes. It is not known whether this puts discharged patients at risk of aortic rupture. The University of Leicester propose to link all patients invited for screening by NAAASP in 2013/2014 with the HSCIC to obtain HES data as outcomes, with yearly updates.

Expected Benefits:

In 2013/14 the NHS completed its first year of national screening for AAA. In the NAAASP men in the year of their 65th birthday are invited to have an ultrasound scan of their abdomen to screen for AAA. Screening men for AAA by ultrasound has proven to be clinically and cost-effective. If an AAA is detected there are well established pathways for treatment of large AAA, which are at risk of bursting (surgery), and clinical monitoring of small AAA, which are at low risk of causing harm. All men with AAA are followed-up by NAAASP. Only around 1.5% of men screened for AAA are found to have an AAA however. NAAASP screens over 300,000 men every year and measures the diameter of their abdominal aorta. It has been well established that aortic diameter is an indicator for the risk of dying from cardiovascular disease, with the highest risk in those with very small or very large aortic diameters. Whilst NAAASP measures and records aortic diameter in the men it screens for AAA it does not follow these men up. Furthermore, attendance rates for AAA screening are in the region of 80% and nothing is known about the long-term risk of AAA-related morbidity/mortality in the men who do not attend for screening. In this project the University of Leicester wish to determine whether there are opportunities to improve the health of men attending for AAA screening beyond simply the detection and treatment of AAA. Since NAAASP has already been set up and is measuring aortic diameters in all men attending for screening, if the University of Leicester can identify those men at high risk of cardiovascular events and flag these men for the institution of secondary prevention in primary care, the University of Leicester can add significant value to the process of AAA screening. Secondarily, the University of Leicester wish to identify whether screening non-attenders are at high-risk or low-risk of AAA-related or cardiovascular events to determine whether additional effort in re-inviting these non-attenders would be worthwhile or not.

Outputs:

The University of Leicester will use this data for research purposes and to feedback to NAAASP outcomes for service evaluation. Only de-identified data will be supplied to the University of Leicester. Due to the long-term nature of AAA related outcomes after screening the University of Leicester expect that the research outputs will not occur for at least 5 years and will continue to be produced at such intervals for at least 15 years. The service evaluation aspects of this work will be produced on a yearly basis. The University of Leicester will produce an annual report for the NHS AAA Screening Programme based on the linked cohort. The University of Leicester will produce research publications from the data. The NAAASP annual report will be sent directly to NAAASP. NAAASP will include summary data in their publically available national programme reports. The University of Leicester’s data table suppression rules are adhered to in the report they send to NAAASP. Research publications will be open-access and available to the public. The University of Leicester will again ensure that the University’s table suppression rules are adhered to in the preparation of these publications. These suppression rules are aligned with the HES analysis guide and where they differ the University’s rules are more robust.

Processing:

1. NAAASP will identify all men invited for screening in the 2013/2014 English screening cohort and all men with small AAA already under NAAASP surveillance. NAAASP holds this personal information for these men for the purposes of their clinical care. NAAASP will provide screening outcome data for the cohort to the University of Leicester. This data will contain a study ID for each individual. No personal data will be transferred to the University of Leicester. NAAASP will provide the NHS numbers of these men to the HSCIC, together with a study ID. 2. HSCIC will link the patients identified by NAAASP with HES/HES-ONS data using the NHS numbers and provide this linked data to the research team at the University of Leicester, using the same study ID as those used by NAAASP to transfer data to the University of Leicester. HSCIC will then supply the University of Leicester with HES/HES-ONS data stripped of identifiers other than the study ID supplied by NAAASP. The University of Leicester will apply for updated linkage reports on a yearly basis. 3. The University of Leicester will receive data from both NAAASP and HSCIC. This data will be linked using the study ID and analysed. The University of Leicester will provide NAAASP with annual reports based upon the data, the content of which will be determined by NAAASP but will primarily consist of all-cause and aneurysm-specific mortality and aneurysm-related morbidity. The University of Leicester will also analyse the data for the purposes of producing research papers focussed on the description of mid- to long-term outcomes of contemporary AAA screening. No personal data will be held or processed by the University of Leicester.