Your GP practice took part in the TargetCOPD trial during 2012-14 to identify patients who had a lung condition called Chronic Obstructive Pulmonary Disease (COPD), but had not yet been diagnosed. This was part of a research programme, which was funded by the National Institute for Health Research (NIHR), and carried out by the Birmingham Lung Improvement Studies (BLISS) research team at the University of Birmingham. Patients in half of the practices received usual care and were not contacted in any way. Patients in the other half of the practices may have been sent a screening questionnaire in the post, or have received one when they attended for an appointment. Some patients were also invited for a spirometry (breathing) assessment and they will have provided written consent for their health records to be accessed.
We found that the best way to identify new patients with COPD was by posting out the screening questionnaire and inviting people for an assessment. However, we do not know whether finding people earlier than usual leads to health benefits such as reduced hospital admissions and improved life expectancy. We have now extended our study (TargetCOPD2) in order to follow patients for up to 5 years in the first instance (2012-2017) to answer this question.
Using your data in TargetCOPD2
To do this accurately, we need to request data from NHS Digital (formerly the Health and Social Care Information Centre). The information we will be obtaining, for everyone identified as potentially eligible for the TargetCOPD trial, relates to hospitalisations for any reason and includes the number of hospital visits or admissions, reason for admissions, length of stays and treatments received.
NHS Digital will also provide us with information about patients who have passed away since the start of the trial, including date and cause of death. The data we obtain will be stored at the University of Birmingham for a period of 10 years, and used only for the purposes of the study by researchers employed by the University.
We can only obtain this data if we temporarily access and share certain information with NHS Digital, so they can identify relevant patients and then provide us with the health data described above. The information that will be shared is patients’ NHS number, date of birth, gender and postcode. We are allowed to hold this information for six months at most, and we will destroy it as soon as we share it with NHS Digital so the data will then be anonymised and cannot be traced back to you. Importantly, no other information that might identify patients will be shared with the BLISS team and no identifiable patient data will be used in any publication or presentation.
The long-term follow-up of all eligible patients is in the interests of the health of the public. The University of Birmingham, acting as both data controller and data processor, can therefore lawfully process the data under GDPR Articles 6(1)(e) (processing is necessary for the performance of a task in the public interest) and 9(2)(j) (processing is necessary for scientific or historical research purposes). No form of automated decision-making, including profiling, will occur within the analysis of the data.
Approval for BLISS researchers temporarily accessing and sharing patient data
The above trial has been approved by the Health Research Authority (ref: 11/WM/0403) and the Confidentiality Advisory Group (ref: 16/CAG/0072). The approvals allow us to access data for all 74,818 patients identified as potentially eligible when we started the TargetCOPD trial in 2012, whether or not they participated. This is necessary so that we can determine if health outcomes differ for the patients receiving earlier COPD diagnoses as a result of the TargetCOPD trial.
Summary of TargetCOPD2
- We will obtain information about hospitalisations and mortality for everyone identified as potentially eligible for the TargetCOPD trial,
- Unless we hold written consent for patients who attended assessments, any identifiable information such as NHS number or date of birth, will be held temporarily by the research team until the linkage has occurred, and then will be destroyed. Patients will then only be identified by a study number that is not linked to any personal data.
- No identifiable patient data will be used in any publications or presentations.
- No identifiable patient data will be passed to any other bodies.
- The TargetCOPD2 trial received ethical approval from the Health Research Authority and the Confidentiality Advisory Group.
More information is available by emailing the BLISS team (bliss@contacts.bham.ac.uk)
Information about your rights regarding the data we hold, the process for lodging a complaint and the contact details of our Data Protection Officer can be found at the following web page (https://www.birmingham.ac.uk/privacy/index.aspx).
Opting out or withdrawing
We hope you will not wish to opt out of the extended TargetCOPD2 study, because the project is of most value if all participants take part. However, if you prefer us not to access your information in this way, please notify your GP practice. We will not share your information if you have already opted out. If you choose to opt-out after we share your information, we will destroy your data received from NHS Digital.