Data access journey

If you are unsure that the services offered by RDS are suitable for your needs, please contact us using the general enquiry form or contact us page. Alternatively, you can complete an eDRIS new enquiry form outlining your proposal and email it to our team at phs.edris@phs.scot. For proposals requiring data from the Scottish Medical Imaging service please complete the SMI enquiry form and return to phs.edris@phs.scot.

You can expect your project to proceed through the following stages:
  1. Triage
  2. Research Coordinator (RC) Allocation & Project Requirements
  3. Approvals
  4. Analyst allocation
  5. Data Preparation
  6. Data release and analysis
  7. Study archival and closure

Triage

On completion of the returned enquiry form, you will be assigned a reference number which you should quote in all future correspondence with the service provider eDRIS. Due to the high volume of enquiries eDRIS receive this will help process your enquiry more efficiently.


At the enquiry stage we can provide an initial quote and details of fees for our services which includes data provisioning, linkage and National Safe Haven support. Your quote will be subject to change if the work starts in a different financial year or there are any changes from your initial requirements.

During triage you may also be signposted to external data providers if you have enquired about this, or if the data you require is not available via Public Health Scotland. As not all data is within our control, we recommend researchers establish relationships with other data providers as early as possible so all parties are aware of the project before submitting for approvals. eDRIS can often provide contact information or make introductions to facilitate the development of a working relationship between all parties involved in a project. Note that other data providers may also charge for their services.

For your study to be assigned an eDRIS Research Co-ordinator (RC), you will be asked to draft your first data access application. On receipt of your application, your study will be added to the Research Coordinator (RC) waiting list. The team’s workload is regularly reviewed to ensure that new studies are allocated as quickly as possible to a RC.

Research Coordinator (RC) allocation and project requirements

The RC will be your main contact throughout the duration of your study. RCs work in collaboration with researchers on specific projects. RC work includes:

  • Assisting researchers in working up a data specification & data flow diagram to define the data sets, data variables, data processing and data linkage prior to seeking permission to help all data controllers involved to make an informed decision
  • Reviewing your PBPP application prior to submission
  • Identifying other permissions if required
  • Coordinating data provision, including linkage
  • National Safe Haven support

Once your application is finalised, they will submit your application to the Public Benefit and Privacy Panel for Health and Social Care (PBPP) on your behalf. In the case of proposals which also require Stats-PBPP permission for Scottish Government data, the RC will review the application and submit on behalf of researchers to SPBPP.

 

eDRIS approvals

For applications considered by Tier 1 HSC-PBPP you should expect to have a decision within 3 working days of the meeting, not including time you may take to respond to any queries. Where further scrutiny is appropriate applications can be referred to Tier2 (Out of Committee, Full Sitting Committee). Other data controllers have their own processes and timescales for informing applicants of their decisions.

You will not have to apply to the NHS Scotland Public Benefit and Privacy Panel if you are an NHS Board employee requesting a data extract of patients resident in your NHS Board area or patients treated within your NHS Board area. Instead you will be asked to complete a confidentiality statement and obtain a signature from your local Caldicott Guardian or Medical Director. For information on ethics and other approvals (including the NSH generic ethics) please see the information linked here.

For applications that require review by Stats-PBPP, you can expect a decision within five weeks of submitting the application. The panel has two tiers and the review will be conducted at the most relevant based on the data being requested.
Other data controllers have their own processes and timescales for informing applicants of their decisions.

Analyst allocation

When a study requesting national health data has secured all the required permissions, and any other necessary documents (cohort files etc) are received, it is added to the queue for an analyst to be allocated. As with RC allocations, studies are allocated to analysts on a first come first served basis – when your study is at the front of the queue it will be allocated to an analyst as capacity allows.

Data preparation 

Once the study is assigned to an analyst they begin work on extracting and/or linking the data. Studies are usually invoiced once the data extract is almost complete, and data will not be released if confirmation of payment (usually a purchase order) has not been received. For studies using the National Safe Haven, all individuals requiring access will complete an eDRIS User Agreement. For more details on the linkage process see the information on this page.

Data release and analysis

When the data have been extracted, the datasets are checked and authorised to make sure that only approved data are released. Datasets are then transferred to researchers using a secure file transfer tool, or uploaded to a Safe Haven for researchers to access there. Studies in the National Safe Haven continue to be supported by the RC who assists with access, upload of supplementary files such as previously written syntax or lookup tables, and carries out statistical disclosure control on output. A guide is available to prepare for disclosure control. It contains the guiding principles that you should follow prior to making a request for files using our output request form.

The eDRIS team ask that you acknowledge the use of our service and the National Safe Haven in any publications/presentations where appropriate.

Study Amendments

Throughout the course of a study amendments may have to be made to an approved application (e.g. Changes to personnel, duration or even data sources/variables). In the first instance please get in touch with your eDRIS coordinator who can discuss your requirements and assist you through the amendments process. For more details on application amendments please see the information on the HSC-PBPP amendments page.

Study Archival & Closure

At the start of your study you will be asked how long you expect to need access to the linked data to carry out your analyses. This should also be stated in any application seeking access to data. The active study area will remain open until the end of the time period specified. It is expected that most researchers would wish to conduct their analysis over an initial intensive period. The study can then be moved to the archive whilst papers etc. are written. If additional analyses are required, the study can be moved back into the active study area for a short period of time before being archived once more. 

One month before this expiry date, your eDRIS Research Coordinator will contact you to check you are happy for all the data held in the active study area to be archived.

Once a study reaches its end date, if HSC-PBPP permission has been sought they will request an end of study report. Studies in the National Safe Haven are archived for a requested time period after analysis is complete, and finally deleted once the archival period is over. Time in the archive can be extended and study data will not be deleted without written confirmation from the researcher.
For new, bespoke data access requests that use only Scottish Government datasets or NRS census data researchers can find more information here.

Not all research projects will follow the outlined data access journey above. These include:

  • CDRFs
  • Information requests
  • PBPP only applications

Need help?

If you feel your project may fall into one of these categories or does not match anything described, please get in touch at phs.edris@phs.scot to discuss your requirements.