Thank you for taking part in the Birmingham COPD Cohort Study. This research programme, which is funded by the National Institute for Health Research (NIHR), started in 2012. In the first phase, from 2012-2014, over 2000 people from 71 GP practices across the West Midlands joined the project. Participants have provided detailed information on their health and lifestyles, creating the basis of a lifelong resource that will help us better understand how lung problems progress and why some people develop more health problems and others don’t.
Using your data
At the time of joining the project, participants consented to allow the BLISS team to access their medical and other health-related records for research purposes
To help us identify what lifestyle and health measures contribute to longer term well-being, we are continuing to follow up on the health of participants. It is important that we obtain accurate health and health-related data from primary care (general practice) and secondary care (hospital) to link with data from participants in the Birmingham COPD Cohort Study. With the support of GP surgeries we are already linking to primary care records. We also need to look at the likelihood of patients visiting or being admitted to hospital as a result of their lung health. The information we will be obtaining, for everyone that participated in the Birmingham COPD Cohort study, 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 (previously known as ‘Health and Social Care Information Centre’) will also provide us with information about study participants who may have passed away since the start of our study, including date and cause of death.
The data we obtain will be stored at the University of Birmingham, and used only for the purposes of the study by researchers employed by the University.
We can access all of this through hospital records by securely sharing some of your personal details, specifically your name, date of birth and NHS number, with NHS Digital who then provides us with the information described above. We sent a letter to all patients giving information about the process and details of how you can opt-out if you wish. If you prefer us not to access your information in this way, please let us know either by e-mail, letter or telephone using the contact details on this website. 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.
It is important to note that:
- Although we need to link data we already hold with detailed information from health records, information that might identify participants will not be shared with scientists and the BLISS team.
- No identifiable patient data will be used in any publications or presentations.
- The Cohort study received ethical approval from the National Research Ethics Service Committee West Midlands – Solihull
More information is available by emailing the BLISS team. If you do not want us to share your information with NHS Digital, you can download our opt-out form and return it to us.
A final report for the first phase of the project will be submitted to our funders in early 2017, with academic peer-reviewed papers being published as appropriate either during or following the study period. Longer term follow up will continue with other phases of the project.
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.
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).
Withdrawal from the Birmingham COPD Cohort study
We hope you will not wish to withdraw from the Cohort study, because the project is of most value if participants continue to provide data and stay with the project. However, participants can withdraw at any time without providing a reason. You can withdraw by phone, email or letter and you can find out more about the options below.
You are free to withdraw at any time from the study without giving us a reason. You are welcome to discuss concerns with us at any time, and the various options you have for withdrawal.
Participants can withdraw at one of two levels:
No further contact
This means that the BLISS team would no longer contact the participant directly but would have permission to retain and use information and samples provided previously and to obtain and use further information from health records. This level of withdrawal leaves the resource intact and will allow us to study disease with the goal of improving the health of future generations.
No further use
In addition to no longer contacting the participant, any information and samples collected previously would no longer be available to researchers and we would only hold information for archival audit purposes. Such a withdrawal would prevent information about the participant from contributing to further research, but it would not be possible to remove data from research that had already taken place.