This page explains what information from patients’ health record is being used, why it is being used, how it is kept safe, and the options that you have.
To enable us to find those who are most at risk from liver disease in the future, we need to look at as many blood tests we can and identify those which show early signs that the person may have problems in the future. In addition, we have designed this project so as to restrict access to data as much as possible and patients also have the option to opt out of their data being included.
Somerset NHS Foundation Trust (SFT) stores a copy of the results of all blood tests taken in Somerset and processed in the central laboratory as part of the patient records that it keeps. This ensures that anyone treating patients in the Somerset health community has access to results which may be critical for diagnosis and monitoring. SFT remains the controller for all the healthcare data used in this project, and this data is not passed to Predictive Health Intelligence Ltd.
We must ensure that GPs provide consent for this project to use the results of any blood tests that were taken in their practices. Over three-quarters of GP practices have agreed to this already and we are in contact with the remainder. The only pieces of information used by the case finding database are the individual’s NHS number, date of birth and blood test results which are relevant in the diagnosis of chronic liver disease. No other personal health information is used. Before any data is shared, the specialist data team at Somerset FT removes all other information. This would make it very unlikely that anyone in the project would ever be able to recognise an individual from the data.
The project follows strict NHS guidelines on confidentiality and information governance. This includes a high level of data security which ensures that only authorised members of the project team can access data. The team has also obtained appropriate approvals throughout this project prior to working with any data.
All patients have a right to restrict the use of their data in some circumstances. However, we hope that patients will understand why it is important to include as many blood results in this project as possible so that the computer can distinguish ‘normal’ from ‘abnormal’ blood results. We also hope that patients are reassured that confidentiality will not be breached.
Opting out – Anyone can opt out of having their data used in the design phase. To do this please contact us.
Opting in – Some patients’ data may be excluded from this work because their GPs may not yet have given permission for their patients’ data to be used for this project. GP practices which have not yet approved use of data for their patients to be used for this project can be found here.
If your GP has not yet approved use of data from their patients but you would like to opt in, you can do so by contacting us. Please note that in some circumstances we may not be able to include all patients’ data due to technical reasons.
Treatment phase – Once the system is fully developed, we will start to find patients in Somerset who may need further investigation and their doctors will contact them in an appropriate way. If your data has not been included in the design phase, it may be difficult to ensure your previous blood tests are re-analysed for possible liver disease. If you are concerned about this, please contact us.