Data linkage in the NAAASP

This page describes a research project we are undertaking with the NHS Abdominal Aortic Aneurysm Screening Programme (the 'NAAASP') where we are using data linkage to find out what has happened to men invited for AAA screening by the NAAASP. This page contains information about the research and forms the Privacy Notice for the research.

This research is being carried out by the University of Leicester, University Road, Leicester, LE1 7RH. 0116 252 2522

 

 

 

Contents:

 

Introduction

What is the purpose of this research?

How will this research question be answered?

What is the purpose of this privacy notice?

What data will be used?

How will the data be combined?

How can two anonymized sets of data be joined together?

How will personal data be protected?

How long will personal data be kept for?

What other information is available?

What if I don’t want my data used in this research?

Who has given approval for this research to go ahead?

General Data Protection Regulation (GDPR) technical details

 

 

Introduction:

An abdominal aortic aneurysm (AAA) is a swelling of the main blood vessel in the body, the aorta. If an AAA gets to large it can burst (rupture) and cause dangerous internal bleeding. AAAs can be repaired by having an operation. Operations to repair an AAA once it has ruptured are much higher risk than operations done before an AAA ruptures. This means that most people diagnosed with an AAA are offered surgery to prevent rupture. In the UK around 8000 operations are performed to repair AAAs each year.

One of the main problems with AAAs is that they rarely cause any symptoms before they rupture. This means most patients will not know they have one. AAAs can easily be diagnosed with a simple ultrasound scan. It has been shown that offering an ultrasound scan to men to screen them for AAA can reduce the risk of dying from an AAA by half. All countries in the UK now offer AAA screening to all men in the year of their 65th birthday.

In England, the NHS AAA Screening Programme (the NAAASP) is run by Public Health England, an executive agency of the Department of Health and Social Care. The NAAASP invites about 280,000 men for AAA screening each year. Four out of 5 men attend for screening and about 1 in 100 men who are screened are found to have an AAA. 99 out of 100 men who attend for screening do not have an AAA.

The NAAASP maintains contact with men diagnosed with AAAs and finds out what happens to these men by contacting the regional vascular services where these men are cared for. For the men who don't have AAAs, and those who don't attend for screening, the NAAASP has no mechanism to find out what happens to these men.

One of the important things about running a clinical programme such as the NAAASP is monitoring how well it is working and seeing if there are any ways to improve the programme. Because the NAAASP doesn't monitor what happens to men who don't have AAAs or don't attend for screening it is difficult to work out if the current NAAASP procedures are missing any men who might develop an AAA in the future. It is also not clear if the diagnostic methods used in NAAASP (which are different from other countries) identify all the men likely to suffer from problems with their aorta. Lastly, for men without AAAs their screening results are not used for anything and it may be that these screening results could be used to improve clinical care.

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What is the purpose of this research?

 

This research will find out what has happened to all the men invited for AAA screening in the 2013 screening year. This information will be used to determine if any men who were not diagnosed with AAAs at the time have gone on to develop an AAA after screening and to see if data from AAA screening can be used to identify men at risk of diseases other than AAA.

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How will this research question be answered?

 

In this research screening results from the NAAASP will be combined with NHS hospital admission records and Office for National Statistics mortality (death) data for each of the men who were invited for screening in the 2013 screening year (April 2013 to March 2014). By combining the results of AAA screening with hospital admission and mortality records we can find out what has happened to all the men screened.

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What is the purpose of this privacy notice?

 

This privacy notice has been published because this research will involve analysing screening results and NHS records from men who have previously been screened for AAA in the NAAASP. It is important that information about this work is made publicly available.

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What data will be used?

 

Two sources of data will be used:

1. The NAAASP records the outcomes for all men invited for AAA screening in a large database. Since the programme started in 2009 over 2 million men have been invited for screening. When men are invited for screening the NAAASP records whether they attended for screening or not. In those men who attend for screening the outcome of their screening scan is recorded.

2. NHS Digital, the secure data warehouse for the NHS, holds data for hospital admissions and deaths.

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How will the data be combined?

Data from the NAAASP and NHS Digital are not routinely combined together in the NHS. Both sets of data are held by separate NHS organizations and cannot be combined without special safeguards and permissions. Neither organization is currently allowed to hold both sets of data in a combined format for the purposes of medical research. The NHS AAA Screening Programme will have to send the NHS numbers for men screened for AAA to NHS Digital so that NHS Digital can identify the men who's information needs to be sent to the University of Leicester. To perform this research both the NHS AAA Screening Progamme and NHS Digital will remove all identifiable data from the datasets before sending them to the research team in a process called pseudonymization. The pseudonymized data will be send by a secure electronic link to the research team (currently the University of Leicester) who will join the two sets of data together. Pseudonymization allows the research team to join the two datasets together without receiving any personal information or identifiable data.

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How can two pseudonymized sets of data be joined together?

 

Both the NAAASP and NHS Digital use an individual’s NHS number as one form of identification in their datasets. NHS numbers are unique to any one individual. NHS number can be used to link together individual records from each set of data. To protect people’s identity this can be done in such a way that whoever is creating the link cannot identify any of the men in either dataset.

The process that will be used to join the data together is as follows:

The NAAASP will add a meaningless unique identification code to the record for each man invited for screening (the 'pseudonym'). The NAAASP will then create two sets of data from this dataset. The first will have all identifiable data removed (name, address, date of birth, NHS number etc.) leaving just the results of screening and the unique identification code for each man in the dataset. This first dataset will be sent to the research team in Leicester by a secure electronic link. The second set of data created by NAAASP will be a list of NHS numbers for all the men in their data set together with the unique identification code for each man. This second dataset will be sent to NHS Digital by a secure electronic link.

NHS Digital will receive the list of NHS numbers and unique identification code from NAAASP. NHS Digital will use the NHS numbers to add information for hospital admissions and deaths to the list. Once complete, the NHS numbers will be deleted from the dataset, leaving a list of information for each man with just the unique identification code attached. NHS Digital will then send this to the research team by secure electronic link.

The research team at the University of Leicester will receive the data from NAAASP and NHS Digital. Because each set of data will have the same unique identification codes for each man the research team will then be able to link together the general practice information from NHS Digital with the screening outcome information from the NAAASP without requiring access to any identifiable data for any of the men in the research study.

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How will personal data be protected?

 

The above process does not require any personal information other than NHS number to be transferred or shared between any of the parties involved. NHS numbers are only shared by the NHS AAA Screening Programme with NHS Digital in this process. NHS numbers will not be sent to the research team at the University of Leicester. When NHS numbers are shared between the NHS AAA Screening Progamme and NHS Digital they will not be combined with any personal information. NHS Digital already holds NHS numbers for all patients registered with a GP in England so they will not be receiving any information they do not already hold. No data will be transferred to any other organisations or countries. Your data will not be used to undertake automated decision-making, including profiling.

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How long will personal data be kept for?

 

The data will be kept for the shortest time possible in order to undertake this research. We expect the research to be complete by April 2020. Once the research is complete all data will be safely deleted.

 

What other information is available?

 

More information about how your personal information is used by the other organizations involved in this research is as follows:

NAAASP (Public Health England): https://www.gov.uk/government/publications/patient-confidentiality-in-nhs-population-screening-programmes/nhs-population-screening-confidential-patient-data#information-shared-by-public-health-england

NHS Digital: https://digital.nhs.uk/about-nhs-digital/privacy-and-cookies

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What if I don’t want my data used in this research?

 

If you don’t want your screening information or general practice records to be used in this way then you can opt out. This will not affect the care you receive from the NHS. More information can be found at the NHS Choices website (https://www.nhs.uk/your-nhs-data-matters/) where you can manage your NHS data choices including being able to opt out.

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Who has given approval for this research to go ahead?

 

Approval for this research will be sought from several authorities.

The NAAASP Research Advisory Committee: This group approves all research that makes use of data from the NAAASP. This committee is made up of managers, doctors, lay members and public health experts from across England.

The Health Research Authority: This research involves the use of individual’s medical records without direct consent. This is undertaken under Section 251 of the Health and Social Care Act 2006. Approval for this work has been granted by the Health Research Authority Confidentiality Advisory Group.

NHS Digital: All data sharing agreements with NHS Digital are approved by the Independent Group Advising on the Release of Data. This group will have approved the release of data from NHS Digital as described here.

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GDPR technical details

The General Data Protection Regulation (GDPR) governs data protection and privacy for individuals. As part of GDPR we are required to provide some technical details about how we use your data in this research.

Data Controller: The data controllers for this research are Public Health England and the University of Leicester. The data protection officers for these organizations are:

Public Health England:

Public Accountability Unit
Public Health England
7th Floor North, Wellington House
133-155 Waterloo Road
London SE1 8UG

dataprotectionofficer@phe.gov.uk

 

 

 

 

University of Leicester:

Information Assurance Services
University of Leicester
University Road
Leicester
LE1 7RH

ias@le.ac.uk

 

 

Legal basis for processing: Data is processed under the legal basis of GDPR articles 6(1)(e) (task in the public interest) and 9(2)(j) (scientific interest).

 

Data retention: AAA is a long-term condition. Events of interest to the NAAASP and to researchers may take many years to develop. For this reason it is necessary that this research will take place over a long period of time and that we retain the personal information used in this research for a long period of time. We will therefore retain the data in this project until 30/09/2030.

Categories of personal data being processed by the University of Leicester: In this research we process anonymised personal data. We do not process any data that can directly identify any person.

Complaints or concerns: You have the right to report any concerns about the way we use and protect your personal information. If this is the case you can contact the Information Commissioner's Office at the address below:


Information Commissioner's Office
Wycliffe House
Water Lane
Wilmslow
SK9 5AF

 

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