Governance

The governance of SHARE is overseen by the SHARE Management Board and the SHARE Studies Access Committee (this includes the Biobank Sub-Committee).

Appropriately qualified individuals in relevant roles sit on these committees; representation is from healthcare, academia, NHS Research Scotland and the Chief Scientist Office of the Scottish Government.

The SHARE Management Board acts as a steering committee and provides oversight of the overall project activities of SHARE and Biobank. There are representatives from all 4 nodal areas and a representative from the small boards on this committee. The SHARE Management Board meets to regularly discuss both general and specific aspects of the running of the SHARE and Biobank project as well as any future potential developments and their possible implementation.

The SHARE Studies Access Committee is responsible for reviewing applications received from researchers to use SHARE for recruitment of participant projects. The Access Committee incorporates a wide range of clinical and academic expertise scoping numerous areas of health research with its membership. The Committee’s activity is coordinated primarily by email correspondence. Videoconferences are organised to discuss more complex projects if contentions arise.

The SHARE Studies Access Committee along with the Biobank Sub-Committee are responsible for reviewing applications received from researchers to use SHARE for requests for samples and/or data based on scientific, technical and ethical grounds. The SHARE Biobank provides delegated ethical approval of pre-consented samples and/or data held within the SHARE biobank to researchers who satisfy the SHARE Access Committee that their application is both ethically and scientifically appropriate. The SHARE Studies Access Committee requires a majority of 70% for approval of an application.

Required documents for studies recruiting participants are: NHS Research Ethics approval and NHS R&D approval for each relevant health board along with the Protocol and Patient Information Leaflet. SHARE must also be included in the protocol as a source of recruitment for the study. Surveys not requiring use of NHS resources do not need NHS R&D approval.

The SHARE mechanism for submitting registrations allows for a secure onward despatch to the NHS Safe Haven (East). Record linkage requires a minimum amount of information for unambiguous identification of the registrant: name, date of birth and postcode, with the opportunity to provide contact details and preferred number of approaches to be made annually by SHARE advising the volunteer of possible research opportunities.

Before a registration form can be submitted, the volunteer must explicitly acknowledge their understanding of the terms and conditions:

• If you decide to join SHARE you are agreeing to allow us to use the coded data in your various NHS computer records to check whether you might be suitable for research projects about health. If you are suitable, we will contact you to let you know about relevant studies. Once you hear more about any study you will have the opportunity to decide whether to take part.
• If you decide to allow the use of your blood, any future blood taken by your GP or in hospital for clinical reasons will be stored under the auspices of the appropriate Tissue Bank. Research teams will then be able to apply to study this blood and your coded NHS Data without having any access to your identity.
• You will be free to withdraw from the SHARE register and /or the tissue bank at any time and your sample will be destroyed and data removed from the register upon request.