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 obtain secondary care data (such as hospital stays), and details about information on any patients who die. In order to do this, we will be sharing certain information about our patients with the Health and Social Care Information Centre (HSCIC). We sent a letter to all patients giving information about the process and details of how you can opt-out if you wish.
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 the HSCIC, 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 December 2016, 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.
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.