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Frequently Asked Questions

eDRIS

NHS National Services Scotland ISD Scotland & NHS National Services Scotland

eDRIS Frequently Asked Questions

eDRIS logo

We have established a list of Frequently Asked Questions to address key aspects of eDRIS

A. Introduction to eDRIS

  1. How can eDRIS help me?
  2. How do I contact eDRIS?
  3. What if I am just applying to Public Benefit and Privacy Panel and do not require all of the eDRIS services?
  4. Is there a charge for the eDRIS services?
  5. Where do I find more information on the Public Benefit and Privacy Panel and the application form?

B. Data for Research

  1. What kind of data are available for research?
  2. How will I know which datasets / variables to request?
  3. What if I do not require individual level data, do I still contact eDRIS?

C. How to become an Approved Applicant / Researcher

  1. How do I become an approved applicant/researcher?
  2. What is included in the training?
  3. If I already have attended training will that do?
  4. What is an Approved Organisation?

D. Approvals for linking data

  1. Who do I have to apply to for linking or accessing data?
  2. What happens once I have all my approvals in place?
  3. What if somebody else joins the research team after approval and needs access to the data?
  4. Do I need ethical approval?
  5. Do I need R&D Approval?

E. Data Linkage

  1. Can you explain the data linkage process?

F. Analysing Data

  1. What files can be transferred to/from the NSS National Safe Haven ?
  2. Who do I contact to ask for my data to be linked?
  3. Can I receive my linked study data to analyse on my own computer?
  4. What if I don't want to use the NSS National Safe Haven to access my data?
  5. How do I access my linked dataset?
  6. How long will my linked data be available for in the NSS National Safe Haven ?
  7. What analysis software packages will be available to me in the NSS National Safe Haven ?

G. Outputs

  1. Can I download data from the NSS National Safe Haven ?
  2. How will I receive output?

H. How eDRIS is secure

  1. What IT security does eDRIS provide?
  2. Are there sanctions for researchers who misuse data?

A. Introduction to eDRIS

A.1 How can eDRIS help me?

The eDRIS service is designed to provide a single point of contact and to assist researchers in study design, approvals and data access in a secure environment.

The level of eDRIS service required can be tailored to meet your requirements and includes:

  • A named Research Co-ordinator from start to finish
  • Help with study design
  • Provision of expert advice on coding, terminology, meta data and study feasibility
  • Assistance with obtaining the required permissions for access to data
  • Liaison with data suppliers to secure data
  • Support to access data within the NSS National Safe Haven
  • Provision of analyses, interpretation and intelligence about data (where required)

The service will be extended to offer support to all applicants applying to the Public Benefit and Privacy Panel for permission to access NHS Scotland data. The team are referred to as Application coordinators on the Public Benefit and Privacy Panel web pages.

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A.2 How do I contact eDRIS?

You can email eDRIS at NSS.eDRIS@nhs.net or telephone 0131 275 7333 to request an eDRIS Research /Application Coordinator who will support you through your study and use of the NSS National Safe Haven .

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A.3 What if I am just applying to Public Benefit and Privacy Panel and do not require all of the eDRIS services?

eDRIS will be acting as a single conduit for all applications to the Public Benefit and Privacy Panel, which is replacing the 3 separate scrutiny panels: CHI Advisory Group, Privacy Advisory Committee and National Caldicott Scrutiny Panel. All applications will be reviewed by an Application Coordinator in the eDRIS team and they will submit on the applicants’ behalf. The team will offer support in the completion of the form so that it is fit for purpose and will be reviewed quickly and efficiently by the panel members.

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A.4 Is there a charge for eDRIS services?

eDRIS charges for its research co-ordination services. The charges are available here Download PDF file [190 Kb]

You may wish to apply to the Chief Scientists Office (CSO) for a small grant to cover the eDRIS charges. Links to other grant awarding bodies can be found on our useful links page.

For social and economic projects, funding is available to cover eDRIS charges from the Administrative Data Research Network (ADRN) and Scottish Government. You should apply for funding using the links available on their website.

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A.5 Where do I find more information on the Public Benefit and Privacy Panel and the application form?

All information regarding the Public Benefit and Privacy Panel can be found at www.informationgovernance.scot.nhs.uk . This website provides background information on the panel, the application form and accompanying guidance notes which should be read when completing the form, the meeting and submissions deadline dates.

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B. Data for Research

B.1 What kind of data is available for research?

Any publically held data can be requested for research, planning and evaluation projects. Information on some key datasets can be found at the National Data Catalogue, ADLS and on our useful links page. Please note that appropriate permissions will be required from the data controller before you can be given access.

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B.2 How will I know what information / variables to request?

For data held by ISD, your eDRIS Research Coordinator will help you to understand what data is available and assist you in deciding what variables would be useful for your study. You can also look at our online data dictionary which has full descriptions of the SMR dataset variables. ISD also holds birth and death data from National Records Scotland (NRS) which can be requested alongside ISD data when part of the same project. If the data of interest is not listed in the online data dictionary please discuss with your Research Coordinator who will advise on availability.

For datasets not held by ISD, information on the content of some useful datasets for research is available on the ADLS website.

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B.3 What if I do not require individual level data, do I still contact eDRIS?

eDRIS is a one stop shop for research and linkage of health and administrative data. You should contact eDRIS at NSS.eDRIS@nhs.net or 0131 275 7333. Your request will be reviewed and you will be contacted regarding the most appropriate next steps.

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C. How to become an Approved Applicant / Researcher

C.1 How do I become an approved applicant/researcher?

There are five requirements for becoming an approved researcher:

  1. All users are required to demonstrate appropriate Information Governance training. This training is designed to ensure you are familiar with the policies and procedures governing individual privacy, data protection and freedom of information, as well as the sanctions which may apply in case of a breach of security or confidentiality of data. See training courses listed in C.2 below.
  2. Your study must have appropriate approvals in place and you should be named in the application or data sharing agreement.
  3. You must read the NHS Confidentiality Code of Practice.
  4. You must be affiliated with an Approved Organisation Download PDF file.
  5. If using the NSS National Safe Haven you must read and sign the eDRIS User Agreement Download PDF file [461kb]. This document outlines all requirements for use of the safe haven including examples of sanctions for breaches. Note that it must also be signed by an authorised signatory from your employing or sponsoring organisation.

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C. 2 What is included in the training?

The training is designed to ensure researchers are fully aware of the policies and procedures governing individual privacy, data protection and freedom of information. For more detail of content, please see the links below.

Please note this is not an exhaustive list so if have undertaken other Information Governance training that covers similar topics to those in the course above you will be asked to provide the course content with your application form so the panel can assess the suitability in relation to your application.

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C.3 If I already have attended training will that do?

Information governance training must be current. Training must be updated every 3 years and if expiry of your training certificate occurs within the time period of your study, you will require to re-attend. If you have attended an alternative course to those identified in C.2, details of content can be provided for consideration with your application form. Please note that Good Clinical Practice training is not accepted.

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C.4 What is an Approved Organisation?

Public engagement work carried out suggested that while the public supported data linkage for research that was in the public interest, there was concern about commercial access. Accordingly, only researchers employed by an 'Approved Institution' will have direct access to data. Approved Institutions are currently restricted to public sector organisations (e.g. Universities, NHS, Local Authorities and Scottish Government). More information on Procedures for approved organisations Download PDF file [42kb]. Researchers from other organisations can partner with an Approved Institution or the eDRIS team for analyses to be carried out on their behalf.

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D. Approvals for linking data

D.1 Who do I have to apply to for linking data?

For studies which DO NOT involve health data -

Approval processes are currently being developed by other organsations. Please ask your Research Coordinator for the latest position.

For studies which DO involve health data -

Studies requiring access to data held by NHS Scotland, ISD or National Records Scotland (NRS) either at individual level or to link to other datasets may require an application to the Public Benefit and Privacy Panel.. Your eDRIS Research Coordinator will advise if this is required and help you complete the application form highlighting key pieces of information you need to include.

You will not have to apply to the Public Benefit and Privacy Panel if you are a 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.

For health data where NHS Scotland is not the data controller you will require permissions from other data controllers such as a local steering committee, local NHS Board Caldicott or Director of Public Health. Please ask your Research Coordinator for advice.

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D.2 What happens once I have all my approvals in place?

Once you have received all the necessary formal approvals please contact your eDRIS Research Coordinator to progress your study. The eDRIS Research Coordinator will arrange for the data to be extracted and linked and if you are using the NSS National Safe Haven will request a secure area to be set up for your study. They will also assist you with the access arrangements or will arrange for eDRIS to carry out the analysis.

D.3 What if somebody else joins the research team after approval and needs access to the data?

All researchers who require direct access to the study data for analysis purposes must be named on the approvals documents to be a eDRIS user. Permission may need to be given by each of the data controllers to obtain access and Information Governance training must be completed before access is granted. Please check with your Research Coordinator to confirm this. Any unauthorised access by individuals may be in breach of data sharing agreements or permissions.

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D.4 Do I need ethical approval?

Ethical approval is required for all research studies unless the following conditions are met.  The research:

  1. is in the field of Health or Social care research;
  2. does not involve any contact with research participants/subjects;
  3. has undergone scientific peer review;
  4. data are held in and accessed via the national safe haven;
  5. will be carried out by UK based researchers only

eDRIS is able to facilitate research that meet the criteria above because NSS has sought and achieved a favourable ethical opinion from the East of Scotland NHS Research Ethics Service.

eDRIS are required to submit an annual report to the NHS Research Ethics Service that documents all of the studies that have been undertaken using national level, de-identified for health and social care research.

D.5 Do I need R&D approval for my study?

If your research involves the use of any resources from a territorial health board then R&D approvals may be required and you should approach R&D for confirmation.  If your study only requires data held at national level by NSS then R&D approval from your local health board is not required.

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E. Data Linkage

E.1 Can you explain the data linkage process?

Data for your study will be linked using established probability matching techniques based on the Howard Newcombe principles. Linkage will be undertaken by a trusted third party and a Population Spine used as an intermediary linkage tool. The Population Spine contains the personal identifiers of all individuals in Scotland who have been in contact with NHS Scotland. The steps describing the process of linking data are detailed below:

  1. Data Providers will supply personal identifiers (only) plus their own person or record ID number to the indexing team.
  2. The indexing team will probability match the identifiers to the Population Spine using complex algorithms.
  3. The Data Provider will receive a file back with their own person or record ID number and a unique person index ID number specific to that dataset. This is generated by the indexing team.
  4. The Data Provider will attached the received index ID number to the remaining content of the dataset to be provided for linkage and send to their Research Coordinator.
  5. The Research Coordinator will confirm that the agreed data has been received and send the file to the linkage agent. The linkage agent is an automated computer programme which carries out the linkage.
  6. The linkage agent will receive 2 files all the datasets and their unique person ID numbers plus a master control file containing a master person ID and all the dataset unique Person index ID numbers.
  7. The linkage agent will then replace all the dataset unique Person ID numbers with the master Person ID number on each of the content data files.
  8. This allows the person analysing the data to see all the records belonging to an individual across all the datasets without the need to see the personal identifiers.

data linkage diagram.

F. Analysing Data

F.1 What files can be transferred to/from the NSS National Safe Haven ?

You may have developed code for a similar study which you would like to adapt for your current study. You can email your code to your eDRIS Research Coordinator who will place the file in your study folder.

Your output files that have been cleared for disclosure by your eDRIS Research Coordinator will be sent to you. Your eDRIS Research Coordinator will provide information on procedures.

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F.2 Who do I contact to ask for my data to be linked?

Please contact eDRIS, via the central mailbox (NSS.eDRIS@nhs.net) or by telephone 0131 275 7333.

You will be allocated an eDRIS Research Coordinator who will support you for the duration of your study. They will help you define the variables required, develop a specification of your linkage and/or analytical requirements for your study, assist in completing your Public Benefit and Privacy Panel application form and other permissions if needed, and accessing the NSS National Safe Haven.

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F.3 Can I receive the linked study data to analyse on my own computer?

Under the Data Linkage Framework Guiding Principles individual level data should be held in a secure environment which can be easily, but securely, accessed by researchers. This is to remove the need for unnecessary transmission and storage of information by researchers in different locations. This is particulary relevant for use of unconsented data. This approach also ensures that data is only retained for the duration of the study and is then destroyed securely.

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F.4 What if I don't want to use the NSS National Safe Haven to access my data?

For studies involving health data, if you do not wish to use the NSS National Safe Haven you will have to explain your reasons when requesting the relevant permissions and demonstrate that the location where you will be storing the data has strong information security and governance. This will be at the discretion of the data controllers.

For studies not involving health data, it is expected that all users will be asked to use the NSS National Safe Haven .

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F.5 How do I access my linked dataset?

You will be able to access your data via the safe haven located at Farr Institute Scotland, No9 Bioquarter, Little France Road, Edinburgh or, in some cases, via remote access from your computer. You will be given a username and password to log on to the computer. More information on using our Safe Havens is available in the Safe Haven section.

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F.6 How long will my linked data be available for in the NSS National Safe Haven ?

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. 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. You can extend the length of time you have access to the data at an additional charge and your eDRIS Research Coordinator can discuss this with you. Data is kept in the archive for the specified time, after which it is destroyed. Archive time can be extended by agreement..

It is expected that most researchers will want 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.

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F.7 What analysis software packages will be available to me in the NSS National Safe Haven ?

You will be able to use the R, SAS, SPSS, and Stata to analyse your study data. A bring your own licence model is now in operation so please ensure your organisation has a licence for these software packages. IT can load any other software you require for your own study area but all those using it must have either their own licence or ensure that their organisation has a licence which can accommodate this use.

Microsoft Word and Excel are also provided in the NSS National Safe Haven. Your authorising employer / organisation must have either a MS Office 2013 licence or a licence which covers upgrades to MS Office if they are currently using an earlier version.

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G. Outputs

G.1 Can I download data from the NSS National Safe Haven ?

No, whether you are using a physical or remote safe haven workstation, you will not be able to extract any data. Secure access points will have no usable USB ports and monitoring software will block and log any attempts to upload or download software or data via external devices. The eDRIS User Agreement Download PDF file [461kb] outlines User responsibilities in handling data.

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G.2 How will I receive output?

Your output files that have been cleared for disclosure by your eDRIS Research Coordinator will be sent to you via email. Your eDRIS Research Coordinator will provide information on procedures.

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H. How eDRIS is secure

H.1 What IT security does eDRIS provide?

eDRIS follows the Data Linkage Framework Guiding Principles and has adopted the best attributes of other services provided internationally. This approach resulted in a service focused on data security and confidentiality consisting of:

  • Secure data provisioning and backup delivered through state-of-the-art secure data technology.
  • Robust information governance procedures based on approved researchers, safe haven users and organisations. Balancing data protection and privacy to support research which benefits the public.
  • Secure File Transfer Protocols to support the transmission of data between data providers and the Safe Haven.
  • Anonymisation separation of roles and robust indexing procedures are designed to minimise risks of breaching individuals' privacy when using confidential, sensitive data. Personal identifiers are kept separate from the attribute/content data.
  • Data linkages created and maintained using rigorous, internationally accepted privacy preserving protocols, direct or probabilistic matching, with clerical review available where required to increase matching accuracy where required. Any data can be requested for ethically approved research, planning and evaluation projects which aim to benefit the public in Scotland. Completion of missing data to improve quality and allow linkage between datasets can also be provided.
  • Secure environments (Safe Haven) for researchers to analyse anonymised individual level or summarised records. eSafe haven access is provided either at Farr Institute Scotland or via remote access, where appropriate.
  • Confidentiality is achieved through restricted access to securely stored confidential data. We use statistical disclosure control methods on statistical outputs, such as graphics, tables or regression analyses, prior to release to ensure disclosure agreements are supported.

These measures aim to ensure data providers are confident of the security of their data. More detailed information can be obtained from your Research Co-ordinator.

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H.2 Are there sanctions for researchers who misuse data?

NHS Scotland believes that penalties will only be an effective deterrent if they are fully understood. It should also be clear that NHS Scotland is more focused on prevention than punishment. The eDRIS User Agreement Download PDF file [461kb] found here must be signed by each Approved User before access to the system is provided. The Agreement also outlines sanctions and penalties which may be applied as a result of non-compliance. An example offence is transferring log in details to any other user. In this case, a first offence would result in 1 year access suspension, while a second offence would result in permanent suspension.

ADRC have a separate user agreement for all ADRC projects and your coordinator will provide you with a copy of this.

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