Using Large-scale Routine Data to Monitor and Improve Ethnic Inequalities in Cancer and Cardiovascular Disease (ODR1920_301)

University College London (UCL) requires access to NHS England National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) Data for the purposes of the following research project:

Using Large-scale Routine Data to Monitor and Improve Ethnic Inequalities in Cancer and Cardiovascular Disease (ODR1920_301).

The project aims are to:

1. Investigate ethnicity reporting in cancer and cardiovascular diseases (CVD) data.

2. Characterise the burden of coexisting cancer and CVD in Black Minority Ethnic (BME) groups.

The objectives are:

· Look at the quality of ethnicity reporting in routine healthcare data.

· Determine the incidence and prevalence of co-existing cancer and CVD by ethnic group.

This project falls under the scope of the Virtual Cardio-Oncology Research Initiative (VICORI) programme which is managed by the University of Leicester.

The following NDRS NCRAS datasets are already held:

- NDRS Cancer Registrations (inc. fields from the VICORI data asset)

- NDRS Linked Hospital Episode Statistics (HES) Accident & Emergency (A&E)

- NDRS Linked HES Outpatient (OP)

- NDRS Linked HES Admitted Patient Care (APC)

This is a request to receive additional fields under the NDRS Cancer Registration product to better understand mortality within the study population.

The level of the Data will be pseudonymised.

The Data is minimised as follows:

- The cohort is defined by people aged over 25 and over who have received a cancer diagnosis (of any type) between 01/01/2000 and 31/03/2018, who then developed cardiovascular disease after the cancer diagnosis date.

- Male breast, female prostate and any individuals with missing vital status have been excluded

The University of Leicester is a controller as the organisation that determines the purposes of processing for the VICORI programme, defining the work packages under which all projects using VICORI data must fall. UCL is a joint controller and processor, as the organisation who determines the purposes of processing for this project.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;

The lawful basis for processing special category data under the UK GDPR is:

Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.

The funding is provided by the British Heart Foundation. The funding is for the VICORI Programme.

The funder will have no ability to supress or otherwise limit the publication of findings.

Amazon Web Services provides IT hosting services to UCL and will store the data as contracted by UCL.

In line with the national data opt-out policy, opt-outs are not applied because the data is not Confidential Patient Information as defined in section 251(10) and section 251(11) of the National Health Service Act 2006.

Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out.

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

The NHS England NDRS will provide the relevant records from the above-listed datasets. The Data will contain no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.

The data will be stored on the UCL Data Safe Haven (DSH), which is supported by servers owned and managed by Amazon Web Services.

The Data will be accessed by authorised personnel via remote access.

The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

Remote processing will be from secure locations within England.

Access to data disseminated under this Agreement is restricted to employees or agents of UCL.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality.

The Data will not be linked with any other data not already referenced under this Agreement.

There will be no requirement and no attempt to reidentify individuals when using the Data.

Analysts from UCL will analyse the Data for the purposes described within this Agreement.

The anticipated outputs for this project will be several recommendations and papers.

The results from the analysis looking at the quality of ethnicity coding in the data are anticipated to be published as a paper, as well as several recommendations to improve the analytical capabilities of routinely collected ethnicity data, and the coding terminology used in the collection of data. The results from the analysis looking at the incidence, hospitalisation and mortality rates for people with both cancer and cardiovascular disease will also be published as papers. Dissemination of the outputs can be done via 3 routes: media; scientific publications and/or presentations and Patient and Public Involvement (PPI) engagement. The PhD outputs are also expected to be presented at relevant conferences, whether cardiology (e.g. European Society of Cardiology Annual Scientific Congress), public health or ethnicity and health (e.g. South Asian Health Foundation annual conference).

The importance of the overlap between cancer and cardiovascular disease (CVD) is illustrated by the novel discipline of “cardio-oncology” which has emerged from the recognition that anti-cancer treatments (e.g. chemotherapy) can be associated with adverse CVD complications (e.g. heart failure). There are similarities at the level of risk factors (e.g. tobacco, obesity) which represent opportunities for shared prevention strategies. Better characterisation of coexisting cancer and CVD may lead to improvements in treatment and prevention of both diseases.

Research has found that ethnic minority groups living in white majority European countries have a higher prevalence of multi-morbidity (2 or more chronic illnesses) and have an earlier onset of multi-morbidity than their white counterparts.

Based on this evidence, there is a need for further investigation into the rates of individuals living with both cancer and CVD as well as looking into the occurrence of these co-morbidities across ethnic groups.

In both CVD and cancer, health inequalities for disease incidence, outcomes and treatment have been reported. Ethnicity health data in the UK has historically been inaccurate and there is a need for further research to determine where the gaps are and how it can be improved.

This programme of work is beneficial to health and social care system for the following reasons:

First, it will improve the public’s health and wellbeing, by identifying health inequalities in individuals suffering from both cancer and CVD.

Second, it will improve population health through sustainable health and care services, by maximising the use of existing national audit data and other National Health Service (NHS) programmes to gain new insights to guide the planning of health services.

Moreover, enhancements to coding for individuals and healthcare utilisation by ethnicity are possible from this research.

Third, it will build the capacity and capability of the public health system, by highlighting which individuals and areas have the greatest need in overlapping multi morbidity for the two most common types of disease, by combining datasets from different health audits, for cancer and CVD.

Data for this study has previously been shared when the data were controlled and managed by Public Health England (PHE). As such there are some yielded benefits to be observed from the access to the data for the study prior to NHS England becoming data controller. These yielded benefits are noted below;

A review of the impact of COVID-19 on multimorbid ethnic minority groups was conducted and published in the JACC cardio-oncology journal.