DARE (Diabetes Alliance for Research in England)
Dear DARE participants,
Welcome to our local study web page which is managed by Barts Health NHS Trust in collaboration with Bart’s and the London School of Medicine at Queen Mary, University of London (QMUL). The Principal Investigator is Professor Graham Hitman. The DARE Study is a community wide partnership between patients and professionals to provide a research resource to enable further studies into the causes, complications, understanding, and management of diabetes.
Since the study started in 2007 over 12,000 people have volunteered within the NE London, Diabetes Research Network, which is now part of the North Thames Clinical Research Network (NTCRN). Nationally, combining the 5 DARE networks in England, there are over 60,000 participants involved in DARE which is a marvellous achievement. We would like to thank you for your continual support and membership of DARE which is greatly appreciated.
On 31 July 2017 the Diabetes Alliance for Research in England (DARE) Study closed to recruitment and will not presently be recruiting any new volunteers. But those 12,000 people who consented to be on our local database will still be contacted about research studies which may be of interest to them. This page will describe how the study team will access and use your health and personal data – this use is referred to as a “privacy notice”.
Who will have access to my data?
The Diabetes and Obesity Research study team will have access to your data. The study team may contact you about studies which we think may be of interest to you. Bart’s Health NHS Trust and QMUL are “joint data controllers” and this means they have overall responsibility for the database which holds and looks after your data. The Trust has a Data Protection Officer who makes sure we respect your rights and follow the law. If you have any concerns or questions about how we look after your personal information please contact the Data Protection Officer at DPO@bartshealth.nhs.uk or by calling 020 7480 4892. Alternatively, please write to Data Protection Officer, Barts Health NHS Trust, 3rd Floor, 9 Prescot Street, Aldgate, London E1 8PR. The Data Protection Officer for QMUL can be contacted at email@example.com or write to Data Protection Officer, Queen’s Building, Mile End, London E1 4NS.
Public authorities such as the NHS and QMUL University are funded by the public purse in order to conduct tasks that are considered to be in the public interest. Therefore the legal reason that we will have to hold and use personal data is stated in Article 6(1) of the Data Protection Act 2018 (e) processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller. This means that the personal data we hold on you as part of the DARE study will only be used to support legitimate research or activities that are considered to be in the public interest. Having permission to hold your data is further covered by Article 9(2)(j) of the Data Protection Act 2018 which deems it necessary for scientific or historical research. Your data is specifically to
support research in the UK and will not be transferred to other organisations or countries.
Consent for access to my personal data
Everyone who took part in the DARE study was asked to sign a consent form. As a reminder, you provided signed written consent at the start of the study for your contact details to be held at Bart’s Health NHS Trust which is part of NTCRN. This meant the study team could send questionnaires and other documents to you in the future. You signed consent giving permission for the trial team to access your medical records. We will access your medical records from an organisation called NHS Digital (formerly the NHS Information Centre) to keep in touch with you and follow up your health status as laid out in the consent form. We have not specified a time in the future when access to your data should stop and this has been accepted by the Ethics Committee Number 2002/7/118. The reason for no time limit on the duration for which your data can be stored is that it is considered a critical resource which should not be time-limited. It is likely that there will be continuing advances in the pathophysiology and genetics of diabetes and related complications over the next decades and this will represent a unique resource to assess the impact.
However, the decision to not place a time limit on holding your data does not affect your right to withdraw from the study. If you wish to withdraw from the study and have your personal data removed please contact the diabetes research manager Dr Gill Hood on Gillian.firstname.lastname@example.org, or telephone 02078828610 or write to her at Diabetes Research Group, QMUL Innovations, Room G2, 5 Walden St, E1 2EF. The right to erasure (“Right to be forgotten” is also outlined in Article 17 of the Data Protection Act 2018) where the data subject shall have the right to obtain from the controller the erasure of personal data concerning him or her without undue delay see https://gpdr-info.eu/art-17-gpdr/
Who are NHS Digital?
NHS Digital is an organisation that collects health and care data from NHS hospitals in England and Wales. Examples of the type of health data that they hold include hospital admissions, operations and certain hospital attendances. NHS Digital also has information about deaths and cause of death. Death data is collected by the Office for National Statistics but can be accessed by researchers with permission from NHS Digital. The DARE team will ask NHS Digital regularly for information about study patients who have died so we can register death rates and causes for people on the database and also to prevent the study team from writing to deceased members.
How will you access my data from NHS Digital?
We will provide NHS Digital with your NHS number, date of birth and postcode to allow linkage to the data held by NHS Digital. The linked data will then be transferred back to Bart’s Health using a secure, encrypted procedure. Only selected, named members within the DARE study team will have access to this data.
Will my participation in the DARE study be kept confidential?
We would like to reassure you that all personal data has and will be handled strictly confidentially at all times and is compliant with the Data Protection Act 2018. The Data Protection Act 2018 is the UK implementation of the General Data Protection Regulation (GDPR). Everyone responsible for using personal data has to follow strict rules called “data protection principles”. They must make sure the information is used fairly, lawfully and transparently
Will my data be shared with anyone?
We will not be sharing your data with anyone outside of the DARE study team and NHS Digital. If we have a request from a third party researcher to contact you about a new research study, the DARE study team will contact you first to give you information about the new study. It will then be your choice if you want your data passed onto another diabetes team. Your data will not be passed on unless you express an interest in a study and want your details passed onto that particular researcher.
You also have the right to seek guidance or lodge a complaint to a higher supervisory body if you wish to. The Information Commissioner’s Office has been set up to uphold information rights in the UK. Please go to their website at https://ico.org.uk or phone 0303 123 1113 for more information.
Can I opt out of the DARE study?
Yes, you can opt out at any time. Please contact us by ringing the diabetes research manager on 02078828610 or email email@example.com. You can also write your request to the Diabetes Research Manager, Room G2, QMB Innovations, 5 Walden St, Whitechapel, E1 2EF.
When will the study results be ready?
Although we are no longer recruiting new people to join DARE, the study will continue in the foreseeable future as many research studies use the database to invite participants into different studies. We intend to publish a list of all the studies which have used the DARE database and to also hold open days for DARE participants to learn more about DARE. Any findings which we might report in studies which use DARE will be anonymised and you would never be identified in any way. Findings will be reported to the NHS and in relevant health journals, and also presented at relevant professional conferences.
Thank you again for taking part in the DARE study. Your participation has been invaluable in improving diabetes care, management and knowledge.