MR420 - NEWCASTLE HEART PROJECT

Mortality and Cancer Data was supplied to Newcastle University by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR420 - NEWCASTLE HEART PROJECT"

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

The following information provides background information on the purpose of the original study. No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated.

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BACKGROUND:

The aim of this study is to measure the prevalence of coronary heart disease, diabetes mellitus and associated risk factors to a cross sectional study of men and women aged 25-64 within Newcastle city boundaries.

Individuals were recruited to the Newcastle Heart Project between 1993 and 1997 and provided written informed consent to participate in the study.

The following text has been drafted for publication online:

The Newcastle Heart Project was a study of 825 White and 709 South Asian men and women, drawn from a sampling frame of over 7000 individuals residing in Newcastle upon Tyne between 1993 and 1997. Individuals who were selected for inclusion and took part in the study completed questionnaires to provide information about their socio-economic circumstances, health and lifestyle and attended a clinical examination.

The data controller for this study is Newcastle University

All organisations party to this agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract ie: employees, agents and contractors of the Data Recipient who may have access to that data).

Mortality and cancer registration data was supplied to Newcastle University by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR420 - NEWCASTLE HEART PROJECT"

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

Below is information provided by the applicant (Newcastle University) on background to the study for details of previous disseminations, and also an insight into what is anticipated will happen once access to new data flows and permission to process data is granted in the future. As stated above - this version of the agreement permits retention of data only - permission is not granted to otherwise process the data at this stage until relevant documentation can be provided.

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The purpose of processing this data is to further knowledge of the associations between risk factors for cardiovascular disease, diabetes and mortality in White and South Asian populations living in the UK. The intention is to inform the development of appropriate interventions to improve public health. It is intended that the data will be retained until 2037 to allow data on mortality to be collected for at least 40 years after individuals participated in the study.

Individuals who participated in the study along with all individuals in the

sampling frame were flagged with NHS Digital. This has enabled the study of the relationship between cardiovascular disease risk factors and risk of mortality in the two populations.

The Newcastle University have sent NHS Digital cohort data from Newcastle Heart Project and expect linkage between the cohort and MRIS data. The linkage will be anonymised. Once complete, the data will be stored in a secure university server.

NHS Digital data will not be shared with any other organisation.

Mortality and cancer registration data was supplied to Newcastle University by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR420 - NEWCASTLE HEART PROJECT"

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

No further outputs of the data are permitted to be created under this version of the agreement. Outputs will only be permitted to be created once a new agreement that meets all of NHS Digital's legal, ethical and security requirements is in place.

The below provides background on to what has already been produced, and what will be produced once data flow and permission to process resumes.

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In the longer term, the aim is to update work published in 2017. This was an analysis of the mortality follow-up of this cohort, examining differences in the relationship between established cardiovascular disease risk factors and mortality between South Asian and White individuals and addressing the question of if differences in socio-economic, cardiometabolic and lifestyle factors explain the healthy migrant effect in the Journal of Epidemiology and Community Health (Hayes et al. 2017 JECH:71:9:863-9).

The aim is to repeat and update the analyses in 2021 to include additional data on mortality in the cohort. It is anticipated this work will result in a publication in a peer reviewed journal and will be presented at an appropriate conference (e.g. Public Health England Annual Conference) to ensure the findings are disseminated to an appropriate audience for the best impact on policy decisions about healthcare.

The Newcastle Heart Project has allowed a better understanding of the prevalence of cardiovascular disease, diabetes and risk factors in White and South Asian men and women.

In addition, all outputs from this study are made available on the Newcastle University website.

Mortality and cancer registration data was supplied to Newcastle University by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR420 - NEWCASTLE HEART PROJECT"

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

The following information provides background information on the benefits of the original dissemination. No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated.

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Additional analysis of this dataset, with a larger number of events available to include in the analysis, will contribute to a better understanding of the relationships between established cardiovascular risk factors and risk of mortality and how these vary by ethnic group and to what extent they support the theory of a 'healthy migrant effect'.

Future analyses will allow confident and robust estimates of the association between risk factors and mortality and of how these differ between South Asian and White populations living in the UK. A better understanding of these relationships could inform targeted interventions to improve the cardiometabolic health and associated risk of mortality in both the White and South Asian population in the UK.

Mortality and cancer registration data was supplied to Newcastle University by the Health and Social Care Information Centre (which has since become NHS Digital) for the purpose of a research study referred to as "MR420 - NEWCASTLE HEART PROJECT"

This Data Sharing Agreement permits the retention of the data for an interim period but no other processing of the data is permitted.

Permission to retain the data for the interim period is a practical step to enable the study to comply with the necessary legal and ethical requirements. If, for any reason, it is not possible for the study to meet the necessary requirements, this Agreement will be terminated, and destruction of the data will be required.

The following information provides background information on the benefits of the original dissemination. No new data will be released under this version of the agreement, and this agreement allows the applicant to hold and not otherwise process any further data that has already been disseminated.

Work carried out using this data has been published and has furthered knowledge on the relationships between established cardiovascular risk factors and mortality risk, demonstrating that South Asians have lower all-cause mortality compared to European origin individuals living in the UK (Hayes et al. 2017 JECH:71:9:863-9) demonstrating that further work is needed to better understand and measure the factors contributing to this survival advantage.

A better understanding of the relationship between established cardiovascular risk factors and mortality, and how this differs between the two groups could have positive impacts on healthcare by influencing decisions made by policy makers and commissioners (for example, guiding their choice of appropriate interventions to reduce cardiovascular disease and diabetes risk in specific populations).