Data Access Request Guidance

Attribute Value
Date created 2023-03-02
Date modified 2023-03-24
Date approved
Version 0.2
Associated documents

Accessing CHIMERA Data in the DSH
CHIMERA Data Release Guidance
CHIMERA End User Licence

Introduction

We describe here the approach to accessing data managed by CHIMERA. We have modelled the data access on the UK Data Service, but reproduce here the key points.

Scope

There are currently two options to access the CHIMERA data resources. We use the terminology from the Office of National Statistics and quote below from the UK Data Service.

The difference between ‘open’ and ‘safeguarded’ is that safeguarded data may have a residual risk of disclosure, and open data do not. Data licensed for use in the ‘safeguarded’ category are not ‘personal data’, but the data owner considers there to be a risk of disclosure resulting from linkage to other data, such as private databases. The safeguards include knowing who is using the data and for what purpose.

Data is made available as follows:

  1. Safeguarded data: Data is made available to users in the UCL Data Safe Haven (UCL-DSH)
  2. Open data: Bespoke anonymised data extracts may be released to the end user

Data request process

  1. Request access to the CHIMERA github repository. This ensures that all users have equal visibility of all ongoing work, and that all data access requests are made transparently. The repository is private by default to ensure that these privileges are managed responsibly.
  2. Once membership of the repository is granted, raise a CHIMERA Data Access Request as an ‘issue’. Please see below for guidance on completion of the form.
  3. Data requests issues will be reviewed monthly by the CHIMERA Scientific Advisory Group (SAG). Please see “Minimum Criteria for consideration of data request” for the assessment criteria.
  4. The outcome of the CHIMERA SAG will be recorded with the original issue, confirming that the assessment criteria have been met.
  5. If approved by the CHIMERA SAG, requesters of;
    - Safeguarded data will be notified and provided with information about how to apply for DSH access. Please see Accessing CHIMERA Data in the DSH
    - Open data: Anonymised and open data extracts will be released directly if already prepared. For new anonymised extracts, a suitable anonymisation process will need to be implemented. We have some experience of this, and may be able to do the work ourselves but this is not guaranteed. More complex requests may need external resource, and it may not be in our gift to support this. Please see CHIMERA Data Release Guidance.
  6. If the criteria for data access or release are not met, the applicant will be notified why their request has been declined and options for alternative requests provided. This will be tracked with the original “issue”.
  7. If approved the applicant will be required to sign the appropriate CHIMERA End User Licence which will be linked to the original data request.

Minimum criteria for consideration of data requests

The application must demonstrate the research

  1. is for patient benefit
  2. has scientific value
  3. has an appropriate methodology
  4. is cognisant of information governance requirements
  5. has a suitable supervisor/academic guarantor
  6. is within the feasibility and workload of the CHIMERA data scientists
  7. is not for commercial purposes

and that the applicant is based in the European Union

Completion of data access request issue

  1. Please submit a request via GitHub.
  2. Access request
    - Safeguarded data
    - Open data
  3. Project Title
  4. Research Question
  5. Summary : Please include Background, Aims, Objectives, Analysis Plan.
  6. Anticipated date data required
  7. Data fields or categories required (to check that we do actually have these fields available)