NHS Digital Data Release Register - reformatted

University Of Leicester

Project 1 — 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 2 — 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

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.

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


Project 3 — 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

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.

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.