MR563 - NEWCASTLE HEART PROJECT - SOUTH ASIAN FOLLOW UP

Under this agreement Newcastle University seeks to continue to retain mortality and flagging status data for use in the Newcastle Heart Project – South Asian follow-up study. No new data is requested under this agreement as the next follow-up analysis using new years of data is not due until 2021.

The Newcastle Heart Project (NHP) was initially a cross sectional study of a representative sample of White and South Asian individuals resident in Newcastle upon Tyne, which aimed to explore the relationship between risk factors for cardiovascular disease (CVD) and diabetes in these two populations and to examine if differences in the relationship between the risk factors and CVD and diabetes between the White and South Asian populations were apparent.

Subsequently NHP participants were mortality flagged with ONS to enable the study team to study the relationship between CVD and diabetes risk factors and mortality in these two populations. Newcastle University received mortality data from NHS Digital until 2014.

Newcastle University is the only organisation involved in the NHP. No other organisations have access to data supplied by NHS Digital.

The study team have been able to use their study data (survey and clinic data of participants) and the mortality data supplied by NHS Digital to explore the issue of the ‘healthy migrant effect’ – that immigrants are often found to have better health than locally born populations. All data held is pseudonymised. The study team examined the hypothesis that differences in established cardiometabolic, lifestyle and socio-economic risk factors account for differences in all-cause mortality rates between South Asians and White individuals living in the UK. At the time of conducting these analyses in 2014 they had relatively few deaths to include in the analysis (406 deaths). The study team wish to be able to retain the mortality registration data received to date, with a view to applying to receive data from 2014 onwards in the future, to allow them to extend their analyses with a larger number of cases that will allow them to make more robust estimates of the relationships between the variables of interest (new years of data are not requested as part of this agreement as new analysis is only undertaken at key intervals, with the next due in 2021).

All the data held by the study team is now pseudonymised and can be linked to NHS Digital only by a unique study number for each individual included in the study.

Previously Newcastle University provided identifiers (NHS number, name and date of birth) for the study cohort to NHS Digital's predecessor organisation for linkage, and received notifications of deaths in members of the cohort back from NHS Digital (MRIS at the time) via a secure portal in an Excel spreadsheet. In 2014 it was deemed that the consent material did not meet current standards, and so all identifiers were destroyed, and only pseudonymised data is now held by Newcastle University. All the data now held, therefore, is pseudonymised - the study data (questionnaire and clinic data), and the flagging/mortality data provided by NHS Digital.

The NHP data is stored on a secure server within Newcastle University and was updated as mortality notifications were received.

Data are only accessed by individuals within Newcastle University who have authorisation from the NHP study team to do so and are substantive employees of Newcastle University.

The mortality data is linked at record level to study data obtained from a questionnaire (consisting of health and lifestyle information such as physical activity) and a clinic visit (information such as weight, height, and glucose tolerance) but no other record level linkage will take place. Record level data linkage to study data is facilitated by the use of unique study identification numbers without personal identifying information being available i.e. all data is pseudonymised.

There will be no attempt to re-identify individuals from the data.

The data will not be made available to any third parties except in the form of aggregated outputs with small numbers suppressed in line with the HES Analysis Guide.

At present the study team request that they are able to continue to hold the data they have already received from NHS Digital as they intend to build upon previous work in the future as additional years of data become available that will enable them to more robustly answer their research question.

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 i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).

In 2017 the study researchers published 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)

This analysis was based on data collected up until 2014. Newcastle University intend to repeat and update their analyses in 2021 to include additional data on mortality in the cohort. The research team anticipates this analysis 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 so that they can impact on policy decisions about healthcare. In addition, all outputs from this study are made available on the Newcastle University website.

All outputs will contain only data that are aggregated with small numbers suppressed in line with the HES Analysis Guide.

Future analyses will contribute to the understanding of the relationships between established cardiovascular risk factors and risk of mortality, how these vary by ethnic group and to what extent they support the theory of there being a 'healthy migrant effect'.

Planned future analyses, based on a larger number of events, will enable Newcastle University to make more 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.

The study has already furthered knowledge on the relationships between established cardiovascular risk factors and mortality risk, demonstrating that South Asians had lower all-cause mortality compared to European origin individuals living in the UK in a paper published in the Journal of Epidemiology and Community Health (Hayes et al. 2017 JECH:71:9:863-9) and demonstrated that further work is needed to better understand and measure the factors contributing to their survival advantage. A better understanding of the relationship between established cardiovascular risk factors and mortality, and how this differs between the two groups from different ethnic origins, could impact 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).