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Data access through direct transfer

Release of the research dataset

The research dataset will only be released for analysis once the SHIP research Co-ordinator is satisfied that all the requirements for such release have been met. These requirements apply whether the data is being released directly to a researcher or for access via a Safe Haven. The requirements are:

  • The research project is logged onto the project management system
  • The project has obtained all necessary approvals, including, if required, Research Ethics Committee approval, Caldicott Guardian approval, Privacy Advisory Committee (PAC) approval, and NHS R&D approval.
  • The project only provides data for the cohort, aims and methods specified in the study protocol.
  • The researcher is on the “approved researcher” list and has signed and dated the SHIP Data Sharing Agreement.
  • A research dataset will only be released once the project level anonymisation has been carried out on the dataset. This step is not required if the project requires patient identifiable data.
  • A research dataset will be released to people identified on the project management system as being linked to the Research Project.  This may be to a dedicated workspace for access via a Safe Haven or directly to a researcher depending on PAC advice.
  • The Data Compliance section of the project management system has been completed confirming that all approvals are in place.

Release of a research dataset is coordinated by the SHIP Research Co-ordinator. If data is being transfered directly to the researcher then the research Co-ordinator will authorise the data custodian to release the data to the researcher once all of the necessary approvals are in place.

The diagram below shows the SHIP process for releasing the dataset:

Set Conditions For Data Access Diagram

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When data transfer is appropriate

If the dataset you seek to use in your research project is given a low privacy risk category by the SHIP Research Co-ordinator after they have undertaken the SHIP triage process, you may be able to avoid having to travel to a Safe Haven to access the data, and instead have the data transferred directly to you. The SHIP Research Co-ordinator will facilitate the transfer of the dataset to you from the data custodian.

Datasets which are likely to be given a low privacy risk category are those which are already in the public domain, and those which contain non-sensitive and non-disclosure data. It is therefore highly unlikely that you will have identifiable personal data transferred to you. In the event that the dataset is not already anonymised, the SHIP indexing service can index the data for linkage purposes.

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SHIP Data Indexing Service

SHIP has established a separate National Indexing Service to facilitate deterministic linkage of datasets. An indexing service receives only a project code, local identifiers and subject identifiers from the data sources for each of the datasets that are to be linked and no other data. The indexing service creates a study specific anonymised identifier for each subject (called a study number) and returns this with the associated project code and local identifier.

The SHIP indexing service will maintain a population index based on a unique patient identifier (UPI; eg the Community Health Index (CHI) in Scotland). The indexing service will add anonymised identifiers (referenced to UPI) to individual records for the purposes of linking these records across two or more datasets. The indexing service will be separate from the linkage agent.

If you are having your research dataset directly transferred to you, you can make use of this indexing service. Once the data has been indexed you will be sent the anonymised identifier.

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