OPCRD-NEXUS

Why we need linked patient data?

In order to carry out thorough research, patient data needs to be analysed across all healthcare settings; from primary care through to secondary care (hospitals) and disease registries. Linking primary care data from GP practices to other health data enables us to provide a fuller picture of patient care records to support vital public health research, including Covid-19 research. This helps bring about advances in science and patient care.

What is OPCRD-NEXUS?

OPCRD-NEXUS is a secure platform that will hold primary care (GP) patient data from OPCRD which has been linked to secondary care (hospital) patient data such as Hospital Episode Statistics (HES) data. The secure platform is hosted by Harvey Walsh Limited. Hospital data for practices in England is provided by NHS Digital.

OPCRD has NHS Research Ethics Committee approval to provide anonymised patient data for research, including data linked with hospital data such as HES data and other health care data (NHS HRA REC reference: 20/EM/0148).

De-identified patient data collected from contributing GP practices who have agreed for data linkage is linked to secondary care or hospital data securely, while protecting patient identity and confidentiality. De-identified data is data which has had personal information and sensitive information removed so that you cannot identify any patient. Data is not received for patients who have opted out of sharing their health information for research.

OPCRD-NEXUS is jointly managed by Optimum Patient Care Limited and Harvey Walsh Limited. The platform has been established as part of a scientific and patient-centred collaboration between OPC and Harvey Walsh to improve the provision of linked primary and secondary care data for research that helps improve patient outcomes including Covid-19.

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Optimum Patient Care Limited (OPC)

Optimum Patient Care is a UK social enterprise that has been providing for fifteen years clinically led quality improvement programmes into GP practices and supports practices to take part in research. OPC maintains and manages the Optimum Patient Care Research Database (OPCRD), which provides anonymised patient data for ethics approved scientific and medical research. OPCRD has NHS Research Ethics Committee approval to provide anonymised patient data for research, including data linked with hospital data such as HES data and other health care data

For more information on OPC and its services please visit: https://optimumpatientcare.org/

Harvey Walsh Limited

Harvey Walsh Limited is part of Open Vie Group and is a leading health research and communications company, with expertise in real world evidence research. Harvey Walsh works through strategic partnerships with the pharmaceutical industry, healthcare and academia on real world evidence projects that drive improvement in healthcare delivery. Harvey Walsh is recognised as a leader in the real world evidence arena for nearly 20 years, supporting over 350 real world evidence projects and facilitating more than 200 publications.

For more information on Harvey Walsh, please visit:  https://www.openhealthgroup.com/

Data available from OPCRD-NEXUS

The platform is starting with over 1.6 million records that are eligible for linking with hospital (HES) data in England and available in OPCRD-NEXUS. We continue to increase the number of linked records, with an ambition of over 10 million records.

Linkable datasets currently available include:

• OPCRD longitudinal primary care (GP) data
• OPCRD patient-reported (questionnaire) data
• Hospital Episode Statistics Admitted Patient Care
• Hospital Episode Statistics Accident and Emergency
• Hospital Episode Statistics Outpatient care
• Critical Care
• Emergency Care Data Set
• CIVIL Registry mortality data

OPCRD holds de-identified data for over 11 million patients in the UK, from over 800 general practices, and over 70, 000 patient questionnaire response data, which have been contributed by GP practices receiving the OPC quality improvement and research support services. The data includes de-identified patient electronic health records, including structured coded data and redacted free-text data.

OPCRD holds de-identified patient reported (questionnaire) data for over 70,000 patients from GP practices participating in quality improvement programmes. This includes patient reported data in Covid-19, asthma and COPD – which are available to access for approved research.

Data from NHS DIGITAL

Linked data from NHS-Digital includes Hospital Episode Statistics (HES) data from England. It contains information on hospital admissions, accident and emergency attendances, out-patient clinics, as well as civil registry mortality data.

Hospital Episodes Statistics Admitted patient care (HES APC) is a data warehouse containing records of all patients admitted to NHS hospitals in England. It contains information on hospital stay or admissions and NHS commissioned activity in the independent sector. It includes hospital diagnoses, procedures, interventions and other hospital admission care information.

Covers April 2009 to present

HES Outpatient (HES OP) data is a data warehouse containing data on individual records of outpatient appointments occurring in England. The data includes information on the type of outpatient consultation appointment dates, the main specialty and treatment specialty under which the patient was treated, referral source, waiting times, clinical diagnosis and procedures performed. HES OP data can be used to support health resource utilisation

Covers the period April 2009 to present

HES Accident and Emergency (HES A&E) is a data warehouse consisting of data recorded during patient care administered in the accident and emergency setting in England, collected by NHS England. A&E data are submitted by A&E providers of all types in England. Data collected includes information about A&E attendance, outcomes of attendance, waiting times, referral source, diagnosis, treatment (drugs prescribed are not included), and investigations provided at the A&E.

Covers the period April 2009 to March 2020

The HES A&E is to be replaced by the incoming HES Emergency Care Data Set (ECDS). The ECDS is the new national dataset for urgent and emergency care, consisting of data recorded during patient care administered in the accident and emergency setting in England, collected by NHS England. Data collected includes information about A&E attendance, outcomes of attendance, waiting times, referral source, diagnosis, treatment (drugs prescribed are not included), and investigations provided at the A&E.

Covers the period April 2020 to present

The Critical Care Minimum Dataset is collected from hospitals and other locations which provide critical care, to support payment, commissioning and national policy analysis. Data collected includes information on critical care admission and discharge, support days per critical care specialty, and discharge status.

Covers the period April 2009 to present

Death registration data contains information from the Office for National Statistics (ONS) and includes information on the month and year of death, and causes and underlying causes (using ICD codes).

Please note that late registration for some deaths means that the proportion of deaths captured is lower for the last year of the coverage period because of possible delays in death registration. This proportion is likely to differ by age at death and cause of death and is pronounced for the last 1-2 weeks of available death data.

Covers the period April 2009 to present

How to access OPCRD-NEXUS

Anonymised research datasets from OPCRD-NEXUS will be made available to research ethics approved studies to conduct scientific and public health research, including Covid-19 research. All research must be reviewed and approved by the Anonymised Data Ethics and Protocol Transparency Committee (ADEPT) before data can be provided from OPCRD-NEXUS. All proposed research must have intent to publish and must have scientific, medical or public health basis.

Anonymised research dataset will be provided within 3 weeks of a researcher receiving ADEPT approval for their study. Provision of data access is subject to compliance with strict Data Sharing Agreement and data retention period.

OPCRD-HES linked data is available from 2009 to present and is updated every 6 months.

For those wishing to perform their own analyses, anonymous patient-level datasets can be provided for ADEPT approved projects. Our data team will work with approved applicants to define their data specification or requirements, as approved by ADEPT.

Applying for OPCRD-HES linked data

OPCRD-NEXUS are regulated by an independent advisory and governance committee – the Anonymised Data Ethics and Protocols Transparency committee (ADEPT). This is an independent, non-statutory expert advisory committee, commissioned by the Respiratory Effectiveness Group (REG) to govern the standard of research conducted on real-world research databases such as OPCRD-NEXUS. ADEPT is responsible for the independent review of proposed research for scientific quality, public benefit, ethical considerations, and any risks posed to patients or data subjects.

Academic and non-academic researchers wishing to conduct research using linked data from OPCRD-NEXUS, must submit their study or project protocol to ADEPT; with a completed study application form covering details of the intended research. All applications must also include a copy of the Chief or Principal Investigator’s curriculum vitae (no more than 2 pages long).

All requests for OPCRD-NEXUS data should be made via the Data Request Form.

After ADEPT approval, the researcher will be required to enter into a strict Data Sharing & Use Agreement and the payment of access or license fees. Access to the required research dataset will then be provided within 3 weeks of the ADEPT approval. All the licensed data will be accessible through a secure VPN access to the dedicated SQL database server.

The application form, the application process, the approval process, and further information on ADEPT is available at: https://www.regresearchnetwork.org/adept-committee/

If you have any queries or feedback, or you have a complaint, please contact us:

Optimum Patient Care Limited
5 Coles Lane, Oakington, Cambridge, CB24 3BA

Email: dataprotection@optimumpatientcare.org
Phone: 01223 967 855