Who will have access to my information?
We take our responsibilities under the Data Protection Act, 1998, and other regulatory governance regulating clinical research very seriously. You can be assured that all information you provide will be stored securely and not passed to any third party without your explicit consent. More details are given below, but should you have any queries or concerns, please get in touch.
All the information that is collected about you during the course of this study will be kept strictly confidential. Any information about you will have your name and address removed so that you cannot be recognised from it. It will not be used or made available for any purpose other than for research, and will not be discussed with your employer, GP, nurse or family members without your agreement. With your permission we will inform your GP of your clinical results, and of any new medical problem we find as a result of the measurements.
All data will be stored securely by the University of Cambridge and MRC Epidemiology Unit (or possibly a professional third party on their behalf), encrypted where necessary, for further use in research into the benefits of physical activity and its relation with metabolic parameters. To protect your privacy and the confidentiality and security of the information you provide to the researchers, a code number will be assigned to you. Only this code number will appear on your information generated for the study.
If you are allocated to one of the two web-based physical activity monitoring groups (group 3 or 4), you will need to register on the program website. You will be asked to enter your name, e-mail address, a log-in name, a password, gender, ethnicity and date of birth into the website. This information is collected to personalise the recommendations that the system makes to you. This website is operated by a collaborator (Imperative, part of AXA ICAS) and is separate from Addenbrooke’s, Cambridge University and the MRC. Imperative will not knowingly sell, rent or trade this personal information. If at any time you wish to permanently remove any personal information from the website database, please contact Imperative directly at the e-mail address provided on the website. Once the study has finished, your personal information will become inactive in the website database. Non-personal, aggregate information may be collected by Imperative regarding the IP address that is used to identify your computer on the internet. This information will only be used to measure interest, traffic and usage patterns of the website. Imperative may share this information with third parties, but it will not identify you personally. No personal information will be made available to any third party. We will not share personally identifiable information with your employer.
To ensure our research is conducted soundly, our studies may occasionally be monitored, for example by the MRC, University of Cambridge, or National Institute for Health Research. This procedure is routine and carried out by fully qualified officials, and data confidentiality is preserved at all times. All data will be collected and kept securely and confidentially. Any web-based data will be stored in a secure central database, and all data files will be backed-up and stored in a secure location. We will share anonymised (non-identifying) data with the study collaborators, Imperative (AXA ICAS). Data will be transferred in a secure format, and will not contain anything that can identify you personally. Our collaborators will adhere to the same data security and confidentiality regulations. At the end of the study the confidential records will be kept for 15 years and then destroyed. The confidential handling, processing, storage and disposal of data are in accordance with the Data Protection Act, 1998.
We will also store link-anonymised samples of blood serum and plasma for future research into the relation between physical activity and metabolic parameters. Link-anonymised means that the individual samples will only be identified by an ID number, which can be linked back to the research information we collect about you as part of this study. This link is necessary to allow us to look at any relationships between biochemical markers and corresponding data collected about you from this study (physical activity, weight, blood test results, etc). Although a link will exist between your blood samples and your personal information, it will be kept separate and securely, and will not released to the researchers. It will not be used to contact you about the results of any future research studies. All samples will be stored securely at a licensed facility, and any future research performed on them will be subject to proper scientific and ethical review. The results of any such studies will not benefit you personally.
Please be aware that should your health deteriorate significantly, such that you become unable to give consent during the course of this research, we would not include you in the study. However, we would like to retain any samples and data already collected from you in an anonymous form for inclusion in our research. If you have any questions, please get in touch with us.