Our evaluation of the NHS Getting it Right First Time programme couldn’t happen without access to patients’ data and this will play a vital role in our ability to get a picture of how the programme is working and the difference it is making to patient care. We want to be clear about how your data is stored, used and protected in our research. One aspect of this study looks at ‘what works and at what cost?’
We are trying to look at whether the Getting it Right First Time programme in orthopaedic surgery has reduced variations in orthopaedic practice and costs, and improved outcomes for patients. To do this, we are requesting confidential patient data for a group of patients who have undergone elective orthopaedic surgery between 1st April 2009 and 31st March 2018.
The data we would like to use include Hospital Episode Statistics (HES), a database containing details of all admissions to NHS hospitals in England, which is collected so that hospitals can be paid for the care they deliver. These data can also be processed and used for other purposes, such as research and planning health services. We would also like to use data from the National Joint Registry (NJR). The NJR was set up by the Department of Health to collect information on all hip, knee, ankle, elbow and shoulder replacement operations across the NHS, to make sure joint replacement implants were working and to also ensure the different types of surgery for these operations were safe and effective.
Secure storage and processing of patient information
Personal data of patients – including NHS number, date of birth, sex, postcode and the study ID will only be securely transferred between two organisations – the Northgate Public Services (who control NJR data) and NHS Digital (who control HES data). This is considered to be personal data according to European data protection rules – the General Data Protection Regulation (or GDPR). As these two organisations currently hold and control the data, and are involved in processing, they are called data controllers. The purpose of sending this personal data between the two organisations is so NHS Digital can link these data together for the same patients, to provide more accurate and complete information for researchers who can track a patient’s journey through the NHS system. However, researchers will not have access to any personal identifiable data, and will not be able to identify patients, using the information that they are given by the two organisations (Northgate Public Services and NHS Digital).
This study has already received research ethics approval – a process designed to make sure researchers’ can benefit from accessing data while minimising risk of any harm to patients – and Health Research Authority Confidential Advisory Group Section 2.51 approvals. The legal basis for processing are covered under Article 6 (1)(e) and Article 9 (2)(j).
Both organisations will securely transfer pseudonymised data to researchers at UCL. Pseudonymisation means the most identifying fields within a database are replaced with artificial identifiers, or pseudonyms so patient information can be processed without researchers being able to identify patients.
All pseudonymised patient information will be stored on a secure network that is password-protected, and can only be accessed by those with specialised training and access for the duration of the study.
The data will be stored by researchers until 2021 for analysis and dissemination purposes, and thereafter will be securely destroyed.
We are happy to discuss your rights to protect your data, and how exactly it will be used in our research. If you would like further information about the use of your data in this research study, or would like to lodge a complaint to a supervisory authority – please contact us on the details given below. If you would like to request that your confidential patient information is not included in this study, please aim to contact us between 1st May – 1st August 2018 to discuss.
Dr Sarah Jasim
NIHR CLAHRC North Thames
Department of Applied Health Research
University College London
1-19 Torrington Place
London WC1E 7HB
Tel: 020 3105 3233