Data Resource Profile: The Virtual Cardio-Oncology Research Initiative (VICORI) linking national English cancer registration and cardiovascular audits

Key Features The Virtual Cardio-Oncology Research Initiative (VICORI) programme brings together English national cancer data and six national cardiovascular disease audits to investigate the interplay between cardiovascular disease and cancer. The VICORI data resource captures adults (aged 18+ years) who were hospitalized for cardiac disease, had a cardiac procedure and/or a cancer diagnosis alongside information on their treatment and outcomes. These data are routinely collected and submitted to health care registries and are linked using a unique health service number. Detailed data on cancer and cardiac diagnosis, treatment, outcomes, previous and subsequent hospital diagnoses and operations, and mortality are available from 6.2 million cancer diagnoses between 1995 and 2018, and 3.8 million cardiac hospital admissions/procedures between 1999 and 2018. The VICORI cohort will be updated on a rolling basis with annual updates from the audits. Interested research collaborators can contact VICORI researchers at [vicori@le.ac.uk]. Cancer and cardiovascular disease (CVD) are the most common causes of morbidity and mortality worldwide. Improvements in treatment strategies for both CVD and cancer have resulted in significant improvements in survival and, as a result, there is an increasing population of patients who now live with both conditions.1–3 It is well known that cancer and its treatment increase the risk of CVD.4–6 Yet a detailed understanding of the underlying relationship between these two conditions and their respective treatments, including both positive and negative modulation of risk, is lacking. This is partly because few cohorts have been large enough to conduct detailed investigations. To address this, the Virtual Cardio-Oncology Research Initiative (VICORI) has linked national cardiac and cancer registries to create a resource of a larger scale and with longer follow-up than typical investigator-led studies. VICORI is an initiative to link data from the English National Cancer Registration and Analysis Service (NCRAS), part of Public Health England (PHE),7 with national cardiac audits held by the National Institute for Cardiovascular Outcome Research (NICOR).8,9 The goals are to: (i) provide a quality-assured data resource for research into cancer and cardiac disease; and (ii) identify new scientific avenues that will further knowledge of cardio-oncology through a portfolio of research projects aligned with the VICORI programme grant. These research projects will study how existing conditions and related treatments affect subsequent disease risk and will optimize patient management through informing evidence-based guidelines. The VICORI programme has created the world’s first whole-country cardio-oncology research platform from multisource electronic health records (EHR) through the linkage of NCRAS with six cardiac audits held by NICOR,8 Hospital Episode Statistics (HES)10 and mortality data from the Office for National Statistics (ONS).11 The linkages are detailed in Figure 1. England is not the only country with national cancer and CVD registries; Sweden is the only other country with a national myocardial infarction (MI) registry, and also has a national cancer registry,12,13 although other countries have more specific registries (e.g. Belgium’s ST-elevation Registry) and non-disease specific national hospital datasets (e.g. Denmark’s National Patient Registry). However, the English cardiac audits are considerably larger than the Swedish heart disease registry, which began in 2009 and has approximately 80 000 new cases a year. VICORI has records for over 3.8 million cardiac events since 1999, with over 180 000 cases a year since 2010. Similarly, there are markedly more cancer cases recorded in English cancer registries (7.9 million between 1999 and 2017) than in the Swedish cancer registry (2.2 million between 1999 and 2017).14 Linkages available between electronic health records within the Virtual Cardio-Oncology Research Initiative (VICORI) resource. HES, Hospital Episode Statistics; MINAP, Myocardial Ischaemia National Audit Project; NACSA, National Adult Cardiac Surgery Audit; NCRAS, National Cancer Registration and Analysis Service; NHS, National Health Service; NICOR, National Institute for Cardiovascular Outcome Research; ONS, Office for National Statistics; PCI, Percutaneous Coronary Interventions. Linkages available between electronic health records within the Virtual Cardio-Oncology Research Initiative (VICORI) resource. HES, Hospital Episode Statistics; MINAP, Myocardial Ischaemia National Audit Project; NACSA, National Adult Cardiac Surgery Audit; NCRAS, National Cancer Registration and Analysis Service; NHS, National Health Service; NICOR, National Institute for Cardiovascular Outcome Research; ONS, Office for National Statistics; PCI, Percutaneous Coronary Interventions. NCRAS is the population-based cancer registry for England7 (Table 1). It collects, quality-assures and analyses data on all people in England diagnosed with malignant and some pre-malignant neoplasms. National coverage began in 1971 with data originally recorded on eight regional databases. There are approximately 300 000 malignant tumours diagnosed in England each year, for which NCRAS processes around 25 million records (i.e. multiple records for each tumour). Standardized coding from 2013 onwards follows the International Classification of Diseases for Oncology (ICD-O3) classification; before this ICD-O2 was used. Summary of key data items collected by the National Cancer Registration and Analysis Service (NCRAS), National Institute for Cardiovascular Outcomes Research (NICOR) audits, and electronic health record sources Patient level (date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation) Tumour level (site of neoplasm, morphology, grade, stage, pathology, site-specific fields) Diagnosis level (date of incidence, basis of diagnosis, route to diagnosis) Treatment level [date of treatment event, type (surgery/radiotherapy/chemotherapy)] Mortality information: date of death, full coded causes of death, location of death (from linked ONS data) Hospital admissions, diagnoses and procedures (from linked HES data) 1997–2019 (data due to be included) Patient level (date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation) Tumour level (site of neoplasm, morphology, grade, stage, pathology, site-specific fields) Diagnosis level (date of incidence, basis of diagnosis, route to diagnosis) Treatment level [date of treatment event, type (surgery/radiotherapy/chemotherapy)] Mortality information: date of death, full coded causes of death, location of death (from linked ONS data) Hospital admissions, diagnoses and procedures (from linked HES data) 1997–2019 (data due to be included) Historical cancer registrations before 1995 are available but data completeness and case ascertainment is less reliable. CABG, coronary artery bypass graft; CVD, cardiovascular disease; HF, heart failure; NCRAS, National Cancer Registration and Analysis Service; NICOR, National Institute for Cardiovascular Outcomes Research; NSTEMI, non-ST-elevation myocardial infarction; PCI, percutaneous coronary intervention; PHE, Public Health England; PROMs, patient reported outcome measures; STEMI, ST-elevation myocardial infarction; TC, Takotsubo cardiomyopathy; QoL, quality of life; ICD, International Classification of Diseases; ONS, Office for National Statistics; HES, Hospital Episode Statistics; OPCS, Office of Population Censuses and Surveys; NHS, National Health Service. Summary of key data items collected by the National Cancer Registration and Analysis Service (NCRAS), National Institute for Cardiovascular Outcomes Research (NICOR) audits, and electronic health record sources Patient level (date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation) Tumour level (site of neoplasm, morphology, grade, stage, pathology, site-specific fields) Diagnosis level (date of incidence, basis of diagnosis, route to diagnosis) Treatment level [date of treatment event, type (surgery/radiotherapy/chemotherapy)] Mortality information: date of death, full coded causes of death, location of death (from linked ONS data) Hospital admissions, diagnoses and procedures (from linked HES data) 1997–2019 (data due to be included) Patient level (date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation) Tumour level (site of neoplasm, morphology, grade, stage, pathology, site-specific fields) Diagnosis level (date of incidence, basis of diagnosis, route to diagnosis) Treatment level [date of treatment event, type (surgery/radiotherapy/chemotherapy)] Mortality information: date of death, full coded causes of death, location of death (from linked ONS data) Hospital admissions, diagnoses and procedures (from linked HES data) 1997–2019 (data due to be included) Historical cancer registrations before 1995 are available but data completeness and case ascertainment is less reliable. CABG, coronary artery bypass graft; CVD, cardiovascular disease; HF, heart failure; NCRAS, National Cancer Registration and Analysis Service; NICOR, National Institute for Cardiovascular Outcomes Research; NSTEMI, non-ST-elevation myocardial infarction; PCI, percutaneous coronary intervention; PHE, Public Health England; PROMs, patient reported outcome measures; STEMI, ST-elevation myocardial infarction; TC, Takotsubo cardiomyopathy; QoL, quality of life; ICD, International Classification of Diseases; ONS, Office for National Statistics; HES, Hospital Episode Statistics; OPCS, Office of Population Censuses and Surveys; NHS, National Health Service. NICOR collects national audit data and produces analyses to enable hospitals and health care improvement bodies to monitor and improve the quality of care and outcomes of cardiac disease patients8,9 and manages the National Cardiac Audit Programme (NCAP). NICOR currently receives data on over 300 000 records per year across six clinical areas: two concerned with particular disease processes (heart attacks and heart failure), and four that cover delivery of specific services (procedures for patients with congenital heart disease, percutaneous coronary intervention (PCI), cardiac surgery and management of cardiac rhythm abnormalities) (Table 1). Figure 2 illustrates how the different sources within VICORI capture different aspects of a hypothetical patient’s journey. Linkage between NCRAS and the six national cardiac audits allows detailed diagnostic, treatment and service provision information, not available in routine secondary care sources such as HES, to be exploited for research purposes. Through this, the VICORI programme will further knowledge into biological mechanisms, treatment effects and the effectiveness of health care delivery for both cancer and cardiac disease patients.15 A hypothetical patient’s health care journey demonstrating data available in the datasets included in the Virtual Cardio-Oncology Research Initiative (VICORI) resource. *date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation; aNCRAS, National Cancer Registration and Analysis Service; bMINAP, Myocardial Ischaemia National Audit Project; cNAPCI, National Audit of Percutaneous Coronary Interventions; dNHFA, National Heart Failure Audit; eNACSA, National Adult Cardiac Surgery Audit; fCRM, National Audit of Cardiac Rhythm Management; gHES, Hospital Episode Statistics; hONS, Office for National Statistics; AMI, acute myocardial infarction; CVD, cardiovascular disease; HF, heart failure; PCI, percutaneous coronary interventions. A hypothetical patient’s health care journey demonstrating data available in the datasets included in the Virtual Cardio-Oncology Research Initiative (VICORI) resource. *date of birth, sex, ethnicity, postcode at diagnosis, comorbidity score, performance status, deprivation; aNCRAS, National Cancer Registration and Analysis Service; bMINAP, Myocardial Ischaemia National Audit Project; cNAPCI, National Audit of Percutaneous Coronary Interventions; dNHFA, National Heart Failure Audit; eNACSA, National Adult Cardiac Surgery Audit; fCRM, National Audit of Cardiac Rhythm Management; gHES, Hospital Episode Statistics; hONS, Office for National Statistics; AMI, acute myocardial infarction; CVD, cardiovascular disease; HF, heart failure; PCI, percutaneous coronary interventions. VICORI is a 5-year (2017–22) programme of research jointly funded by Cancer Research UK and the British Heart Foundation. VICORI is led from the University of Leicester by co-principal investigators D.A. and M.P., with research support from the Biostatistics Research Group at the University of Leicester. Along with institutional partners at PHE and NICOR, the programme steering committee consists of academic collaborators from the University of Leicester, University of Oxford, University of Birmingham, University College London, University of Leeds, Imperial College London and the Royal Marsden NHS Trust. VICORI is built on four key principles; (i) collaboration: working with external researchers to facilitate access to the data resource (see Data resource access); (ii) legacy: ongoing commitment to the VICORI data resource beyond the 5-year programme duration; (iii) dissemination: ensuring maximal coverage and understanding of study findings; and (iv) patient and public involvement: centring patients to ensure research strategy and governance is carried out with, rather than for, them. The research programme has received favourable ethical opinion from the North East—Newcastle & North Tyneside 2 Research Ethics Committee (REC reference 18/NE/0123). NCRAS collects and curates the national cancer registration dataset for England, including details on the patient, cancer type (including morphology), how advanced the cancer is and treatments. Identification of cases (‘case ascertainment’) is very high.16,17 Data completeness has improved in recent years; for example stage at diagnosis and ethnicity are now better recorded.7 However completeness is variable for other data items, such as performance status, due to limitations in data collection by health care providers. Treatment information is available from data directly processed by NCRAS as well as from linkage to e-prescribing systems for chemotherapy [the Systemic Anti-Cancer Therapy Dataset (SACT)],18 radiotherapy machines [the National Radiotherapy Dataset (RTDS)]19 and activity data from HES (for inpatient, outpatient and accident and emergency admissions).10 Linkage to HES provides further in-hospital information before and after diagnosis, including diagnosis and procedure codes, as well as the opportunity to improve completeness of some variables and check data quality. Linkage to ONS provides data on date and cause of death. Table 1 provides a summary of data items available from NCRAS. The six national cardiovascular audits administered by NICOR are: (i) the Myocardial Ischaemia National Audit Project (MINAP)20; (ii) the National Heart Failure Audit (NHFA); (iii) the National Adult Cardiac Surgery Audit (NACSA); (iv) the National Audit of Percutaneous Coronary Interventions (NAPCI); (v) the National Congenital Heart Disease Audit (NCHDA); and (vi) the National Audit of Cardiac Rhythm Management (NACRM) including devices and ablation datasets (Table 1). The audits are completed by participating hospitals in England [all National Health Service (NHS) hospitals and some private hospitals] and, in some audits, other countries in the UK. The VICORI partnership has gained permission to obtain data from each of the NICOR audits for patients in England. A strength of the combined NICOR datasets is detailed recording of in-hospital cardiac care and procedures. Available data include but are not limited to: phenotypic specification of acute coronary syndrome admissions (ST-elevated MI, non-ST-elevated MI, unstable angina, cardiomyopathy), severity (ejection fraction, number of vessels, cardiogenic shock), pre-existing comorbidities, detailed in-hospital treatment information, discharge medications, procedures, care pathways and outcomes. Case ascertainment of myocardial infarctions (MI) in MINAP is not complete, but it is improved by linkage with HES and ONS.21 HES is a nationwide dataset of all admissions to NHS hospitals in England. International Statistical Classification of Diseases and Health-Related Problems 10th revision (ICD-10) codes record medical diagnoses, and the Office of Population Censuses and Surveys Classification of Interventions and Procedures (OPCS) Version 4 is used to record the procedures that are undertaken (Table 1). Dates of death for deceased patients in the VICORI cohort are supplied by ONS. Causes of death, extracted from death certificates using ICD-10 codes, are available for all cancer and will available for patients in NICOR audits at the (Table 1). VICORI over 6.2 million cancer diagnoses in million recorded between 1995 and 2018, and 3.8 million cardiac admissions and procedures, recorded between 1999 and in of the six national cardiac audits (data from is due to be included in 000 patients in both the cancer registry and more of the cardiac audits. 000 patients have both a cancer diagnosis and a hospital for acute coronary as by There are 000 patients with both cancer and heart and 000 with cancer and an cardiac The between the cancer registry and the available NICOR audits is in further in Figure The the between NCRAS and the different cardiac audits. The most linkages are between NCRAS and of the NICOR audits, for approximately 80 000 patients in both NCRAS and MINAP but in other cardiovascular 000 patients in NCRAS, MINAP and other of patients in the National Cancer Registration and Analysis Service who also in more of the National Institute for Cardiovascular Outcome Research (NICOR) audits. is to the by and Cardiac Rhythm Management ablation procedures Cardiac Rhythm Management devices National Heart Failure Audit; NACSA, National Adult Cardiac Surgery Audit; National Audit of Percutaneous Coronary Interventions; Myocardial Ischaemia National Audit Project; National Cancer Registration and Analysis Service. of patients in the National Cancer Registration and Analysis Service who also in more of the National Institute for Cardiovascular Outcome Research (NICOR) audits. is to the by and Cardiac Rhythm Management ablation procedures Cardiac Rhythm Management devices National Heart Failure Audit; NACSA, National Adult Cardiac Surgery Audit; National Audit of Percutaneous Coronary Interventions; Myocardial Ischaemia National Audit Project; National Cancer Registration and Analysis Service. The linkages are detailed in Figure 1. Through linkage patients in each NICOR audit are linked (i) other NICOR (ii) the cancer registry (iii) hospital records and (iv) death records The VICORI resource of linkages between the national cancer registration treatment datasets and HES, and ONS death Linkage between the NICOR audits and NCRAS the NHS which patients in the UK. NICOR datasets are to a and to ensure data quality and of data for in of cancer registration data has been NICOR NHS using an together with data from the six NICOR audits are to PHE, which the to NHS for their cancer Linkage of the two data sources within PHE working using the NHS number. The data are on a Cancer Analysis PHE has permission to cancer cases it data but cases The VICORI research only have access to including and have been from the dataset to and Patient information which facilitate such as cases is with is not available in the PHE has been permission to information on cancer patients for health improvement and service provision the to by of the NHS NICOR has for the collection of cardiovascular audit This is by the Group of the Health Research for the VICORI linkage has been from the Health as data for the NICOR audits, PHE as data for NCRAS, and NHS as data for HES and ONS, and is to data for the VICORI programme has been from the North East—Newcastle & North Tyneside 2 Research Ethics Committee number to access VICORI data are through to the VICORI Project (see Data resource access and through to the Office for Data There are on who can However, are to that with UK data This the of the Data and the are to by the of a which on data study research the of the VICORI ethical are also to to by the of the through a The cardio-oncology linkage will to be by the study partners NCRAS and in English cohorts is by capture within more of the audits registries and will on a rolling VICORI will annual updates from HES, NICOR, NCRAS and ONS, ensuring that VICORI will to be a resource for cardio-oncology research beyond the 5-year programme grant. the linkages to ONS and HES follow-up of patients who in England their death, for all causes of death. The available follow-up between The of each dataset is in Figure datasets are available to and all but and the datasets have more than of data The follow-up available in each of the datasets in the Virtual Cardio-Oncology Research Initiative (VICORI) resource. aNCRAS, National Cancer Registration and Analysis Service; National Radiotherapy Systemic Anti-Cancer Therapy Myocardial Ischaemia National Audit Project; National Heart Failure Audit; National Adult Cardiac Surgery Audit; National Audit of Percutaneous Coronary Interventions; National Congenital Heart Disease Audit; National Audit of Cardiac Rhythm Management; Office for National Statistics; Hospital Episode The follow-up available in each of the datasets in the Virtual Cardio-Oncology Research Initiative (VICORI) resource. aNCRAS, National Cancer Registration and Analysis Service; National Radiotherapy Systemic Anti-Cancer Therapy Myocardial Ischaemia National Audit Project; National Heart Failure Audit; National Adult Cardiac Surgery Audit; National Audit of Percutaneous Coronary Interventions; National Congenital Heart Disease Audit; National Audit of Cardiac Rhythm Management; Office for National Statistics; Hospital Episode The VICORI programme is used to address a of research It has four each with a clinical It will new knowledge in the four areas: management of cardiac and outcomes after diagnosis of cardiac in patients with a previous cancer VICORI allows detailed of cardiac management from the NICOR clinical audits. research how the management of patients with cancer who are hospitalized with from patients a cancer risk of cancer after cardiovascular treatments, and research are specific cardiovascular procedures risk for subsequent cancer (e.g. risk of cardiac disease in patients for cancer. research cancer treatments increase the risk of subsequent cardiac management of cancer and outcomes in cancer patients with pre-existing cardiac linked NCRAS and HES the VICORI has how CVD comorbidity a in in cancer patients and the of CVD research previous surgery of a radiotherapy strategy for and of cancer research is undertaken to better the ascertainment of cases in the MINAP, HES and However, this not the of VICORI data to avenues to understanding the and pathways between cardiac disease and cancer include common risk the of care delivery on CVD and cancer diagnoses and treatment, and of mortality in risk VICORI data also be used in the conduct of in This include case outcome ascertainment and and provide strength of the data resource is the of a large to investigator-led cohorts that on a of VICORI has the cohort and clinical to detailed on a of This is as management and across different disease quality-assured data also it to an was the of for a previous diagnosis had been VICORI will be updated with new data on cancer and cardiac diagnoses, treatment and outcomes, increasing the of the limitations of the VICORI data have been A key of in is data quality. Data quality in VICORI be by and information, such as ethnicity, is less in some datasets (for example of patients in have but this is improved by linkages that allows information to be from other However, data data sources are hospital admissions be recorded in MINAP, and HES, which in their and level of Linkage quality is Linkage processes can through both and and affect the of However, data into VICORI has been by cancer and CVD registration and on unique NHS is by data the data sources in their and data are available in all datasets from the dataset available for in VICORI is the National Cancer Registration which is available from This in in analyses and the of detailed cancer treatment, as data are available from 2009 and data from VICORI external researchers to access full details of the including data are available on the VICORI can for access to linked VICORI data by an in the first for data access is to of a and data by the VICORI Project The the (i) and quality of the underlying the of the study and (ii) from other and within (iii) and and (iv) has a to a is to the Office for Data at working with VICORI a dataset for the and ensure data governance are To access the have a for the data with an basis and in to the The VICORI data will in key The cohort will increase as more are diagnosed and for cardiac and cancer. will be to provide to the data and the to investigate new research include linkage to the UK VICORI the to a national NHS data with linkage by between and cancer registry and other key data care and quality of This was by the VICORI which has been by from the British Heart and Cancer Research UK the support of the National Institute for Cardiovascular Outcomes Public Health England and their and the NICOR audit to as external for the VICORI This data that have been by patients and collected by the NHS as part of their care and The data are and quality by the National Cancer Registration and Analysis which is part of Public Health England has received from has received and/or from been research from PHE, and is a of and for D.A. has received research to support a clinical research from has also received from for research and has undertaken to support research for other of and and