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Heart failure affects almost 1 million people in the United Kingdom and survival has not improved over time. The outcome for patients with screen-detected heart failure is currently unknown.

 The Echocardiographic Heart of England Screening (ECHOES) study, carried out between 1995 and 1999 in 16 general practices around the West Midlands region, established the prevalence of heart failure in the general population over the age of 45.  All patients were assessed by detailed clinical history and examination, 12 lead ECG, and echocardiography.

The 6162 participants who attended the ECHOES study are currently flagged with NHS Digital.  This enables the study team to report who has died between the time of the screening assessment and the present, and the date and cause of death. This work has added to knowledge around heart failure survival (see linked papers).

The ECHOES team, led by Chief Investigator Professor Richard Hobbs, is now based at the Nuffield Department of Primary Care Health Sciences at the University of Oxford with ongoing collaboration with the University of Birmingham, led by Professor Daniel Lasserson. The team are currently working on the next project of the ECHOES-Survive programme exploring the 20-year prognosis of the ECHOES cohort.

ECHOES-Survive continues to link the information provided by participants at study visits with NHS Digital and civil registration data to report the survival rates, and cause of death, for the whole ECHOES cohort. This work will determine how long people live for following a diagnosis of heart failure, and whether they die from heart-related problems or something else, to help doctors and patients understand more about the condition.

The University of Birmingham (UoB) is the data controller for the ECHOES study. For the ECHOES-Survive project, the data processor is the University of Birmingham. UoB works in partnership with the University of Oxford and the NIHR-funded Oxford Biomedical Research Centre. Only staff at UoB have access to the data.

A minimum amount of identifiable data (name, date of birth, NHS number) from ECHOES participants is shared with NHS Digital by the University of Birmingham to carry out the linkage between the study data and civil registration data. The common law duty of confidentiality is met by participants giving consent to participate in the ECHOES study. NHS Digital provides date and cause of death directly to the study team. As soon as the date and cause of death is linked with the participants study information, any data that could be used to directly identify individuals (name, date of birth, NHS number) is removed. The data will be stored for the duration of the ECHOES-Survive study. The current end date for the study is 31st March 2019 but the study may extend beyond this date if further funding is secured.

If you are an ECHOES participant, you are free to withdraw your consent for data linkage with NHS Digital at any time. Please contact the study team at M.Brookes@bham.ac.uk, call 0121 4147582 or write to us at ECHOES-Survive c/o Melissa Brookes, Institute of Applied Health Sciences, Murray Learning Centre, University of Birmingham, B15 2TT.

Personal and personal sensitive data are processed. The legal basis for processing under the General Data Protection Regulation (GDPR) is Article 6(1)(e) ‘task in the public interest’ and 9(2)(j) ‘research’. Personal data is stored until linkage of the dataset has been completed then removed. The data protection officer for the University of Birmingham can be contacted at d.deighton@bham.ac.uk.  

All participants in the ECHOES study have the right to request from the controller access to and rectification or erasure of the personal data, or restriction of processing of personal data concerning the data subject, or to object to the processing of such personal data, as well as the right to data portability. The full details of the privacy policy, including how to make a complaint, can be found at: https://www.birmingham.ac.uk/privacy/index.aspx