How far back does ResearchOne data go?
ResearchOne data comes from electronic patient records and the clinical system, SystmOne. Records have increasingly become electronic since the 1970s and paper records were typed up or scanned electronically during the transition. When an organisation migrates clinical systems, their patient records are transferred across. As such, the data charts a patient from birth, regardless of when their care providers began using SystmOne. This means that longitudinal records are available for epidemiological research.
Your research question will determine your data requirements and how far back you want the data to reach. When paper records were digitised, the more clinically pertinent information such as observations, diagnoses and medications were well transcribed. Details about individual appointments, for example the duration, have been more accurately recorded electronically in the last ten or so years. As clinical practice changes, it is worth considering that more recently recorded consultations may be more representative of current practice.
Can I apply for data from ResearchOne?
Watch this presentation to get an idea of how ResearchOne can support projects. If your project is using non-identifiable data for a research purpose that may provide meaningful insight health and patient care, then you may choose to request data from ResearchOne. You can check the programme of research which ResearchOne can support. Your project must be research, as defined by the NHS Health Research Authority. To check this, you can read their research definition and use the decision tool.
What is the process for getting ResearchOne data?
The process is outlined here, and depicted in these slides. The principle investigator submits an Expression of Interest for a feasibility assessment. The ResearchOne team check that the data requested can be delivered by ResearchOne, any amendments that may be needed to ensure that the data received can address the research question, and calculate the cost for performing the extraction. The outcome of the feasibility assessment is returned to the research team, who may choose to submit a Data Request for the independent ResearchOne Project Committee to review. Subject to approval, ResearchOne schedule the extract and provide the data as specified in the Data Request. Everyone who will be accessing the extract will need to submit a signed Confidentiality Agreement to ResearchOne before receiving the data. Read more information about research access.
Can I get data from primary, secondary and social care?
SystmOne records integrate data from multiple organisations into one record per patient. Each organisation controls the information that they have entered. Therefore, as more organisations join ResearchOne, more comprehensive records will be available for research. For example, you may require GP and Palliative Care data, which ResearchOne can provide if organisations from both types have opted in.
How do I request clinically coded observations such as diagnoses?
CTV3 is a terminology used in Primary Care to describe patient care and treatment. You may be interested in only CTV3 codes pertinent to specific diagnoses, measurements and treatments, such as ‘hypertension’ or ‘blood pressure’. You can find these by searching the CTV3 code browser. Access the CTV3 codes via NHS TRUD to make a list of CTV3 concept IDs for the diagnoses of interest, e.g. H32..,XaYai.
You could use CTV3 codes to define the cohort of records that you need information from, and to request coded data. To define a record cohort, let us know which codes are to be present, and any that are to be absent. You will need to indicate whether a code is specific, or whether you also want ‘child’ codes to be treated in the same way. To request CTV3 data, you need to give us a list of the relevant codes, and specify whether each code is ‘specific’ or whether ‘child’ codes are also required.
When you provide lists of CTV3 codes, each CTV3 concept ID should be 5 bytes long – please check your list and provide these in a comma separated variables or .txt (e.g. Notepad) format file. Other information, such as CTV3 descriptions, are not required. You will usually want to include codes regardless of their concept status (current, optional, redundant, extinct), as clinicians may choose to use a code of any status. The ResearchOne Project Committee will review your requested code list to ensure that you receive the minimum required dataset.
If you already have a list of version 2 Read Codes or SNOMED codes then these will require mapping across to CTV3. When you map across, make sure you also check the CTV3 browser so as to avoid missing codes, as version three is more comprehensive. If you just map from a V2 list up to CTV3, you may miss some CTV3 codes that are relevant but have not been mapped to V2 ones in your list.
If you require secondary care clinical data then please also consider whether you need to request any of the following: OPCS codes from TRUD, e.g. C23 (Operations on eyelid), ICD10 codes from WHO, e.g. R06.0 (Dyspnoea), and A&E related codes from NHS Data Dictionary.
You will need to give some information about the required diagnoses in the Expression of Interest, for the purposes of feasibility assessment. If you are in the early stages of proposal development then it would not be necessary to provide a code list until you submit a Data Request.
How do I request vaccine information?
You can list the vaccine information that you require in the Expression of Interest. You may be interested in specific vaccine contents, for example, polio’; ‘H1N1 swine flu’ and you can search the vaccine content list for these. Otherwise you may request vaccine information by brand name, for example, ‘Repevax’, ‘Pediacel’. You can request other information such as dates and consent details. Your research may mean that you request all vaccines for a cohort of patients, in which case the ResearchOne Project Committee will review this to ensure that you receive the minimum required dataset.
How do I ask for pathology test data?
Provide and relevant CTV3 codes with your data request, as outlined in the above section. You can also provide lab test report titles, such as ‘serum cholesterol’. You can ask for such variables as the date associated with the CTV3, request or report, and associated results or whether they were abnormal.
How do I ask for prescribing data?
Browse the British National Formulary Classification to identify the chapters that relate to the drug groups that you are interested in. Prescribed medications are linked to these chapters and ResearchOne will use this to provide the relevant coded drug information, including the medication name (as applicable).
You could use BNF chapters to define the cohort of records that you need information from, and to request coded medication data. To define a record cohort, let us know which drug groups are to be present, and any that are to be absent. You will need to indicate whether a chapter is specific, or whether you also want sub-chapters to be treated in the same way. To request prescribing data, you need to give us a list of the relevant BNF chapters, and specify whether each chapter is ‘specific’ or whether sub-chapters are also applicable.
Provide a list of all the relevant 14 byte chapter headings, e.g. 03.00.00.00.00; 05.01.02.01.00. Please provide these in a comma separated variable or .txt file format with your Data Request. You can list high-level chapter headings if you have checked that all sub-headings include only drug groups of interest, and if you specify this in the request form.
Can I link with other data sources?
A data request will need to be submitted directly to all data sources. ResearchOne data can be linked pseudonymously to external pseudonymous datasets – this is in order to protect patient and provider confidentiality. ResearchOne data cannot be used in identifiable research. If you have ethical approval and explicit consent or Section 251 approval to access data from specified records then this may be provided from SystmOne. Specify your linkage requirements in the Expression of Interest. Read more information about data linkage.
How do I define the inclusion and exclusion criteria?
You will need to specify any factors that are relevant to your research, such as the data time-frame, demographics, or cohort size. Consider whether you need a control group, patients that meet multiple criteria, etc. Inclusive/exclusive terms may help, e.g. patients aged Z AND with diagnosis X OR Y AND (medication A OR B OR vaccination X).
What format does the data come in?
It is usual to receive files with comma separated variables. The format will depend upon the data request, e.g. it may be aggregated. If you request record-level data then this is tabulated per category, e.g. medications and vaccinations, with a project-specific record ID that links between tables. In this example, if there were two relevant vaccines on a record, there would be two rows with that record ID in the vaccination table, and the medication table would have one row per medication from the record.
How would I receive the data?
The de-identified data for your project is encrypted and transferred electronically, for example to an FTP server. Universities often have a secure file exchange server through which ResearchOne can send the encrypted data to a university-based research team.
What proof of destruction does ResearchOne require?
In the data request you are asked to define how the data will be stored and for what duration. If a destruction timeframe has been approved by the ResearchOne Project Committee then you will need to submit a destruction certificate to ResearchOne. Your organisation should have a procedure for this, and you may use this certificate template. Failure to do so results in the members and organisations associated with the research project being unable to receive further ResearchOne data. Any breaches are referred by the ResearchOne Database Committee to the relevant national body.
I have consent to view specific patient records. Can ResearchOne help?
ResearchOne data does not hold patient, provider or organisation identifiers. If your project has consent and approval to receive specific records data then this may come from SystmOne. You would follow the procedure highlighted above regarding ResearchOne data requests and will be able to specify your request in the form.
Our research has produced outcomes! What next?
ResearchOne data is used in the agreement that outcomes and methods are published openly for the health and social care community to access. The codesets used should be made available so that research can be replicated. To make sure that your research supports clinicians, patients and other researchers, you send ResearchOne your findings (or a link to any publications) and codesets to be disseminated, for example, through the ResearchOne website. If your research can be piloted or developed into a support system then we can work with you to embed it in SystmOne. You can then evaluate its impact on clinical practice by using ResearchOne data.