
Source: www.cancerresearchuk.org
Cardiff & Vale University Health Board
The following section contains important information about who has access to your personal information and our responsibilities to you regarding the management of personal data.
Birkbeck College, University of London is the sponsor for this study based in the United Kingdom. We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. Birkbeck College will keep identifiable information about you for 3 years after the study has finished. To ensure your privacy, all information is kept securely and cannot be accessed by unauthorised persons.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.
You can find out more about how we use your information at www.bbk.ac.uk/psychology or by contacting the Chief Investigator, Dr Virginia Eatough at v.eatough@bbk.ac.uk. Certain individuals from Birkbeck College and regulatory organisations may look at your research records to check the accuracy of the research study. Birkbeck College will only receive information without any identifying information. The people who analyse the information will not be able to identify you and will not be able to find out your name, NHS number, or contact details. Birkbeck College will keep identifiable information about you from this study for 3 years after the study has finished.
How will my data be used?
The anonymised information that you give the researchers will be written up and submitted as a research study. It may also be submitted for professional, peer related review and make an important contribution to publications, conference papers and articles that aim to raise awareness of the needs of men diagnosed and living with male breast cancer.
How long is my data kept?
Any information you give us will be anonymised in order to ensure your privacy. Uncoded and anonymised information will be kept in secure password protected and locked storage systems at Birkbeck College. Only the anonymised transcript of your interview will be kept at the researchers’ residence for the duration of the study, after which it will be destroyed.
What are the benefits of taking part?
Participants will not be paid for taking part but where applicable, all reasonable travel expenses will be met.
By consenting to take part in the study, you will be contributing to a research study, conference papers and journals which aim to discuss and raise awareness of the specific concerns and needs of men who have been diagnosed with male breast cancer and how best to support them. It is hoped that the interview process will be a positive and enriching experience for you. Taking part in the study will not have any impact on the medical care or support you are undergoing.
Are there any disadvantages to taking part ?
There are no perceived disadvantages- Your participation is entirely voluntary and the researcher will not require direct access to your medical files or patient information. The researcher will ensure that any personal information and data gathered from interviews is anonymised and kept securely in order to ensure your privacy.
Right to withdraw
You can withdraw from the study at any point and without having to offer an explanation.
Participants have the right to withdraw inclusion of their data up until the point it has been anonymised and aggregated into a larger dataset, after which it is impractical to withdraw it.