BRHS Data Sharing Policy - Underconstruction and subject to change
BRHS as an Open Access data resource
The research team are committed to maximizing the use of the BRHS data to advance scientific knowledge. The data we have collected since 1978 will be established as an open-access resource to share our data and facilitate other research in the wider community, either in collaboration with us or independently. The specific benefits from the use of our data will be to generate further high-quality research evidence about prevention of chronic diseases and to improve the health of older populations.
Data Access Application details
An Independent Data Access Committee which will consist of three external senior academics has been set up. The Committee will include (1) Professor Ivan Perry (Professor of Public Health Epidemiology at University College Cork) who will chair the committee, (2) Professor Martin Rutter (Professor of Cardiometabolic Medicine at the University of Manchester) and (3) Professor Rebecca Hardy (Professor of Epidemiology and Statistics at University College London and Director of CLOSER: Cohort and Longitudinal Studies Enhancement Resources).
The Committee will make its own independent decision which will be reported to the applicant via the BRHS research management team. The Committee will meet regularly and a decision is expected to be made within 4-6 weeks of receiving the full application.
Data Access Application and review stages
We plan to adopt a managed access model and intend to ensure that data will be shared in response to requests wherever it is possible to do so. The policy on managed data access is based on the need to protect participants and act within the scope of their signed consent, ensure compliance with UK legal and regulatory requirements, ensure high quality research and that data security is maintained.
The application process will be initially through direct contact with the BRHS Research Management Team. All communications relating to each application will be retained so that there is a comprehensive file available for audit.
There are 3 stages to the application process which are outlined below:
1. Registration: To confirm the identity of each person seeking to use the BRHS data Resource and to check that they are bona fide before registering them as an approved researcher. All Requestors will be required complete a researcher registration form. Requestors should be employees of a recognized academic institution or health service organization with experience in medical research.
2. Application for data access:
The applicant will complete an application form which will be submitted to the BRHS Research Management team*. The form will be checked to see if it has been adequately completely. If not, it will be returned and the applicant will be asked to resubmit. Completed checked application forms will be sent on to the Independent Data Access Committee to review. The BRHS Research Management Team will also submit comments and recommendation to the Independent Data Access committee (IDAC) to take into consideration. IDAC will consider the application and recommendation on the grounds specified which includes (i) whether the proposed research use meets the required criteria for access (including being a bona fide researcher and meet the requirements of ethical approvals of BRHS data); (ii) clearly defined objectives and sound methodology (iii) appropriate and available selection of data (iv) in the case of biological sample requests, whether the amount of sample required is scientifically justified (v) defined timelines and outputs.
3. Agreements for approved applications: Signed Agreements (ethical approval where applicable) will need to be executed and access charges paid before release of data and/or samples are sent to the approved researcher.
*The BRHS research management team will comprise of Lucy Lennon (Senior Research Administrator) and Olia Papacosta (Data Manager) together with the investigators on the programme grant.
Bio Resource- Restricted access to samples (bio-resources)
The BRHS has small volumes of plasma and serum which were collected at 20, 30 and 40 year examinations and are held in secure alarmed freezer facilities in Glasgow and London. The principles of access will be the same as for BRHS data, except that because the samples are finite, access to them needs to be carefully controlled and coordinated to ensure the most effective scientific use of the resource. Access to blood samples will require scientific justification, which will be reviewed by the Independent Scientific Advisory Committee (IDAC) and the laboratory custodians of these samples in Glasgow since these are limited resources. Priority will be given to collaborations that involve an extensive range of quality-controlled assays of all (or sufficiently large numbers of) samples using high-throughput and cost-effective assay methods. Interested collaborators will be asked to e-mail the BRHS Investigators to discuss such proposals in advance.
BRHS Data Sharing
The collection and management of data of the BRHS has been made possible through grant funding from UK government agencies and charities. We welcome proposals for collaborative projects and data sharing. For general data sharing enquiries, please contact Lucy Lennon firstname.lastname@example.org