ECHOES-Survive

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.

Overview

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.

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.

ECHOES Team

The ECHOES team, Clare Taylor, Andrea Roalfe, Rachel Iles, 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 Tom Marshall. The team are currently working on the next project of the ECHOES-Survive programme exploring the 20-year prognosis of the ECHOES cohort. 

Data Management

The University of Birmingham (UoB) is the data controller for the ECHOES study. This means that we decide how to use it and are responsible for looking after it in accordance with the General Data Protection Regulation (GDPR).

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. Access to your data within the University is restricted to the ECHOES team. We have no intention to share your data. Your data will not be used for marketing purposes e.g. profiling.

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. 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, date of death) is removed. The data will be stored for the duration of the ECHOES-Survive study. Under Section 251 of the NHS Act 2006, the Health Research Authority has given approval for us to use your data without your explicit consent for medical research.

Personal and personal sensitive data are processed. The legal basis for processing under the GDPR is Article 6(1)(e) ‘task in the public interest’ and 9(2)(j) ‘research’. The data protection officer for the University of Birmingham can be contacted at dataprotection@contacts.bham.ac.uk.

Your data are stored on our secure servers at the University of Birmingham and will not be transferred outside the EEA. Your data will be held securely in accordance with the University’s policies and procedures. Further information is available on https://www.birmingham.ac.uk/privacy/index.aspx

Participant information

Your Rights

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 echoes@contacts.bham.ac.uk, telephone 01865 289300 (or 01865 289281) or write to us at ECHOES-Survive, c/o Institute of Applied Health Sciences, Murray Learning Centre, University of Birmingham, B15 2TT.

All participants in the ECHOES-Survive study have the right to:

  • Ask us for copies of your personal information
  • Ask us to correct any information you think is inaccurate or ask us to complete information you think is incomplete
  • Ask us to erase your personal information
  • Ask us to restrict the processing of your information or object to processing of your information
  • Ask us to transfer the information you gave us from one organisation to another, or give it to you.

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

Contact

If you wish to raise any queries or concerns about this privacy notice please contact the study team at clare.taylor@phc.ox.ac.uk or andrea.roalfe@phc.ox.ac.uk, telephone 01865 289300 (or 01865 289281) or write to us at ECHOES-Survive, c/o Institute of Applied Health Sciences, Murray Learning Centre, University of Birmingham, B15 2TT.