This section provides an overview of the process required for researchers to gain access to data sets via ResearchOne.
Research often depends upon having a large enough dataset. This may be to show the potential impact of the research in a funding application, or to attach statistical significance to a correlation. The NHS Health and Social Care Information Centre has an Indicator Portal that is extremely useful in determining the number of patients that the research may relate to. For example, it shows the rate of chronic heart disease among GP practices, or the number of hospital admissions due to asthma.
Most projects require data sets consisting of non-identifiable data from ResearchOne, without the need for external data linkage. In such cases, the principal investigator should begin by submitting an Expression of Interest to the ResearchOne team with a brief summary of the project. This form is available on the Documentation page. We will then contact you regarding the feasibility and format of the data request. The process involves pricing the extract based on the size and complexity of the required data. We aim to provide data very cost-effectively. The principle investigator returns a Data Access Request in order to proceed.
The form needs to be completed by the principal investigator or project team. This includes details of the projects aims, potential outcomes, data items required and cohort size, for example. Any additional requirements can also be included on the forms, for example, the need for any analytic support, bespoke terminology mapping or academic health informatics consultancy.
The application is then considered by the ResearchOne Project Committee. It is assessed on the basis of both the quality and value of the project and the need to maintain patient and provider confidentiality. The NHS Research Ethics Committee (REC) has approved that this is the process of review for all projects using ResearchOne data.
If the project is approved, the ResearchOne team will finalise the data extraction requirements with the principal investigator and also send out additional information, such as the required confidentiality agreements for signing.
After all the access steps have been completed the data will then be extracted automatically from the ResearchOne database. This will be a minimum data set required to achieve the project goals, containing the approved data items and the approved number of research records.
The data set contains record identifiers to enable entries within the set to be effectively joined. This is necessary to link the diagnostic codes and prescribing data that have come from a single research record, for example. Note that these record identifiers are unique to the project being carried out. It is not possible to aggregate further data sets via these identifiers – this is in order to minimise the risk of any confidentiality breach.
Once the extract has been completed, the files will be strongly encrypted and transferred electronically to the project team. The project may require subsequent data extractions in order to assess outcomes or measure the impact of interventions. In these cases a schedule can be agreed with ResearchOne and the up-to-date extracts delivered electronically as specified.
Projects that require a pseudonymised key for linkage with external data sets follow a similar process to that outlined above. The external datasets must also be pseudonymous so that the project team cannot identify any data. The details of the required linkage should be included in the initial enquiry, made by completing the Expression of Interest form from the Documentation page. The ResearchOne team will then contact you to discuss the technical details of the linkage and any necessary applications for ethical and governance approval.
The ResearchOne database has only de-identified data and cannot support identifiable research projects.
Researchers may have been granted ethical and governance approval to access data from specified patient records. This may be for a project that has explicit patient and organisation consent or a recommendation by the Secretary of State for Health via a Section 251 approval.
This data comes from SystmOne, where there is explicit consent and ethical approval, or it is required under Section 251.
The process for data extraction is again very similar to that outlined above and commences with the principle investigator submitting an Expression of Interest (download this from the Documenation page). The ResearchOne committees will need to review your ethics and governance coverage before the project can proceed. If all the necessary approval has been obtained, then the pseduonymisation process will be used to identify the research records required for extraction. Please contact us for further details.