Heart disease is still one of the biggest killers in the UK despite a lot of progress being made to understand and treat the underlying cause. Heart disease is a major issue for people living in Salford, so we have created a study team to try to reduce the numbers of people who have a heart attack.
- We will use anonymised data to try and find new patterns that show someone is at risk of having a heart attack. Anonymised data does not contain any names, addresses, or other identifiable information.
- We will use this information to build better computer programs to help doctors to spot people at risk
- This study has been checked by people living with heart conditions and all the regulatory bodies to make sure it is a good idea, has benefit to patients and is designed to the highest standards
- We won’t keep the data any longer than necessary
- You can opt out using the NHS opt-out service, or by emailing the data team
What we plan to do in a bit more detail:
A team from the NHS at Salford Royal Hospital and scientists at Manchester Metropolitan University will use the latest computing techniques to find patterns in NHS patient data included in electronic medical records from people that had a heart attack between 2015 to the present day. The computer software will be used to find patterns that may ‘predict’ that someone is at risk of having a heart attack. This information will be used to develop better computer tools that help doctors identify people who are at greater risk of having a heart attack so they can offer treatment and prevent heart attacks from happening.
When a patient attends a GP or hospital appointment each diagnosis or event is given a code. The computer software will use these codes and other information such as blood test results (‘data’) to find patterns that might indicate someone is at risk of a heart attack. No data will be used that identify an individual. Any information that might identify a person, for example names, addresses, post codes etc, is removed before the data is used by the computer team.
Why can’t we ask individuals for permission to use their data?
For this to work, we need to include data from electronic records for as many people as possible and not exclude any particular group of people, otherwise the findings won’t be useful for that group. As we want to look at data for the last 7 years, it is possible some people might have passed away or moved out of the area. This would make it impossible for us to ask for their permission to use their data. If we don’t include these people’s data it might mean we miss patterns in a particular group of people. This group of people may then not benefit from the results of the study and any improvements to healthcare that comes as a result. For example, if we did not include records from people who have died in the past 7 years, the computer software may not be able to find patterns in people who are the most seriously ill, or older people, which will limit the usefulness of the computer program we develop for the NHS to use.
How can you opt out?
The NHS already has a system for people to opt-out of having anyone use their data for research. You can find details on the NHS website here: https://digital.nhs.uk/services/national-data-opt-out. We will not use the data of anyone who has already opted out using this process. If you would like to specifically opt-out of this study and not others, please send an email with your name and NHS number to email@example.com and we will make sure we don’t include your electronic records in our study.
Who checks this study is well designed and in the public/patients interest?
There are lots of checks in place to make sure that any data used for research is for the good of patients.
1) When we first started to design this study, we asked people who were registered with Research for the Future and lived with heart conditions if they thought it was a good idea and they gave us the ‘thumbs up’. We have a patient representative on our study team to help champion and include a patient perspective in all discussions about how the data is studied and the results used to benefit patients.
2) This project has been reviewed and approved by an NHS ethics panel. The purpose of the panel is to make sure research is well designed and in the public/patient interest.
3) This study was looked at by both patient representatives and scientists from the British Heart Foundation during the funding application stage.
4) Lastly, the project has been reviewed and approved by a special Government panel who regulate the use of patient data called the Confidentiality Advisory Group (CAG). Ideally, we would want to ask everyone whose data will be included in this research if they agree to this, but as this proposed study will include information from so many people from the past 7 years it is not possible to do this. The CAG act on the behalf of patients to judge if it is in their best interests and for future patient benefit.
We won’t keep data any longer than is needed to do this work and will delete it as soon as we are finished, or by 5 years at the latest.