NHS Digital Data Release Register

NHS Digital Data Release Register - reformatted

University of Oxford

Opt outs honoured: N

Basis: Informed Patient consent to permit the receipt, processing and release of data by the HSCIC

Format: Identifiable Sensitive

How often: One-Off

When: unknown — 11/2016

HSCIC Id: DARS-NIC-388486-D9M5N-v0.1

Data: Hospital Episode Statistics Admitted Patient Care

Data: Hospital Episode Statistics Outpatients

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Members and Postings Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Members and Postings Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Flagging Current Status Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Members and Postings Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: Hospital Episode Statistics Admitted Patient Care

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: Office for National Statistics Mortality Data

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Bespoke

Data: Birth Notification Data

Data: MRIS - Personal Demographics Service

Data: Patient Reported Outcome Measures

Data: MRIS - Personal Demographics Service

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Cause of Death Report

Data: MRIS - Cohort Event Notification Report

Data: MRIS - Scottish NHS / Registration

Data: Hospital Episode Statistics Admitted Patient Care

Data: Office for National Statistics Mortality Data (linkable to HES)

Data: Hospital Episode Statistics Admitted Patient Care

Data: Hospital Episode Statistics Outpatients

Data: Hospital Episode Statistics Admitted Patient Care

Data: Hospital Episode Statistics Accident and Emergency

Data: Hospital Episode Statistics Critical Care

Data: MRIS - Scottish NHS / Registration

Data: MRIS - Members and Postings Report

Data: Hospital Episode Statistics Admitted Patient Care

Data: Patient Reported Outcome Measures (Linkable to HES)

Data: Hospital Episode Statistics Admitted Patient Care

Output: Publications are produced on an ongoing basis. These do not identify individuals and contain only aggregated data with small numbers suppressed in line with the HES Analysis Guide. Results are disseminated in peer-reviewed open-access papers in research journals, and related presentations to national and international colleagues, including clinicians. EPIC currently has funding to follow up patients until 2020.

The data is processed only by those named researchers and students within the Cancer Epidemiology Unit. For all of these outputs data is released only de-identified data in aggregate form (tabulations and figures showing analysis results at the minimum level of detail required, using small number suppression).

Publications and a summary of the research outputs are available to the public, to participants and to health researchers and clinicians through the study website (www.epic-oxford.org).
EPIC–Oxford results are reported in the media such as the BBC and national newspapers e.g. (http://www.bbc.co.uk/news/health-21258509 and http://www.telegraph.co.uk/news/health/news/9837285/Vegetarians-a-third-less-likely-to-develop-heart-disease.html) and its outputs reach a worldwide audience.

Future anticipated work using HES, ONS mortality and Cancer Registry Data:

The EPIC-Oxford’s Medical Research Council Grant MR/M012190/1 "Health of vegetarians" specifies a programme of research on the associations of vegetarian diets and related nutritional factors with the incidence of common diseases. In 2017 and 2018 the study will analyse:
• the relationships of vegetarian diets with the risk for ischaemic heart disease, extending previous published research on this topic with larger numbers of incident cases identified through HES and examining the extent to which the effects of a vegetarian diet may be explained by the consumption of saturated and polyunsaturated fatty acids, fruit and vegetables and dietary fibre. The intention is to complete this manuscript early in 2018 and to submit it to the British Medical Journal.
• In parallel analyses commencing in 2017, the study will examine the associations of vegetarian diets with risk for stroke, using the HES linkage to identify incident cases and to categorise then as ischaemic, haemorrhagic, or other types of stroke. Preliminary analyses based on a previous linkage to the HES data suggested that vegetarians had a somewhat higher risk of stroke than meat-eaters, but the number of cases was too small for robust analyses. With the new linkage to HES about 2000 cases of stroke are expected which will provide sufficient power to conduct reliable analyses, and to explore the possible roles of protein and vitamin B12 in determining stroke risk in vegetarians. The intention is to submit this manuscript in 2018 to the journal Circulation.
• Following these analyses of cardiovascular disease, at the beginning of 2017, the study will commence analyses of the relationships of vegetarian diets with the risk for musculoskeletal disorders: fractures of the forearm, wrist and hip, hip and knee replacement, and carpal tunnel syndrome. The study will examine whether associations of vegetarian diets with the risk for these disorders may be due to differences in intake of calcium and protein, and will aim to submit the papers to the American Journal of Clinical Nutrition in late 2018/early 2019.
• In 2019-2020 the intention is to examine vegetarian diet and gastrointestinal diseases including Crohn’s disease, ulcerative colitis and gallstones.
• The study’s Cancer Research UK grants on the Epidemiology and Aetiology of High Risk Prostate Cancer and the core grant of the Cancer Epidemiology Unit(CEU) specify a program of research on the risk for prostate cancer and the cancers in relation to and related factors and other diseases.

Conferences
The intention is to present the research findings at the following conferences:
• 2017 – Nutritional Society UK Symposium
• 2017 European Association of Urologists
• 2018 7th International Congress on vegetarian Nutrition., Loma Linda California.
• 2018 The National Cancer Research Institute (NCRI)
• 2019 The National Cancer Research Institute (NCRI)

Activities: The majority of the EPIC-Oxford cohort are flagged on NHS Digital’s MIDAS system. NHS Digital provide monthly updates on participant events including removals and re-entries to NHS registration, cancer registrations and deaths including cause of death details.

The EPIC-Oxford team will supply a file of identifying details for additional participants of the EPIC-Oxford study that are not currently flagged within this cohort on the NHS Digital system. NHS Digital will then flag these members.

NHS Digital will link the full cohort to Hospital Episode Statistics records and supply pseudonymised linked data to EPIC-Oxford.

Using the study ID, the EPIC-Oxford team link the data with study participants’ records collected over time directly from the participants and from NHS Digital and ONS plus linked data from Scotland (via the Public Benefit and Privacy Panel for Health and Social Care) and from Northern Ireland (via the Central Services Agency). The linked data is stored separately from the patient identifiers. Participant identifiers linked to the study ID numbers are stored separately to the dataset for use in analysis and are held only for administrative purposes and for use in facilitating ongoing data linkage. The analysis dataset (containing the study participant’s linked records from the sources specified above) will not be re-linked with the identifiers. The analysis dataset contains full date of death for individuals whose deaths were reported prior to December 2016. This is the only identifiable field held within the analysis dataset. All subsequent data supplied by NHS Digital will be pseudonymised. It will contain month and year of death rather than full date of death. The analysis dataset also contains month and year of birth.

Only month and year of birth and/or death will be used in future analyses. All subsequent analyses use only subsets of the pseudonymised data. All such subsets are customised according to the characteristics relevant to the specific analysis containing only the minimum data required for the specific purpose.

Various types of analyses are undertaken on an ongoing basis for the overarching purpose of assessing cancer incidence, health risks and overall mortality. The data will be held only at the Cancer Epidemiology Unit at the University of Oxford. The datasets will be pseudonymised as described above before statistical analyses are undertaken.

The data will only be accessed by authorised members of the EPIC-Oxford study team, all of whom are substantive employees of the University of Oxford, or non-contractual DPhil,MSc students who complete University Research Services form agreeing to terms and conditions of the project, grant and latest Data Sharing Agreement. These are filed in Research Co-ordinators office with signed copies sent to Director of Research Services at University of Oxford. Access to ONS mortality data is restricted to individuals with Approved Researcher accreditation named within the Data Sharing Agreement. The data will only be used for the objectives of the study as described within the Data Sharing Agreement. The EPIC-Oxford study will not share any data supplied by NHS Digital with any other institution or individual outside of the study team at Oxford University.

Objective: EPIC-Oxford is a nationwide cohort study of approximately 65,000 men and women aged 20 and above who were recruited between 1993 and 1999 from throughout the UK. The study was designed to examine the effects of diet on long-term health, with a specific focus on vegetarians; 50% of the participants do not eat meat, with large numbers following lacto-vegetarian and vegan diets, and EPIC-Oxford is the only large prospective study in the world with dietary data and stored blood samples for a large number of vegetarians together with linkage for the whole cohort to medical records covering cancer diagnoses, hospitalisations and causes of death. To produce scientifically valid results it is essential that the whole EPIC-Oxford cohort can be linked with information from medical records, because if linkage was not complete there would be a high risk of the results being biased by showing spuriously low rates of disease in some dietary groups. All EPIC-Oxford participants provided written informed consent at recruitment to the study in the 1990s.

When the study first commenced the records available were for cancer registrations and causes of death. Linkage to data from HES became possible after the completion of the recruitment to EPIC-Oxford, and linkage to HES was first established in 2008.

The study website has been continuously updated since 2010 and has informed participants of the important publications which have been possible through linkage to the HES data, such as the 2013 paper showing for the first time that the risk of hospitalization or death from ischaemic heart disease was 32% lower in vegetarians than in non-vegetarians in the UK, which was widely reported in national media such as the BBC and national newspapers (http://www.bbc.co.uk/news/health-21258509 and http://www.telegraph.co.uk/news/health/news/9837285/Vegetarians-a-third-less-likely-to-develop-heart-disease.html).

EPIC’s research on the long-term health of vegetarians is unique in the world and is supported by a grant from the MRC (“Health of Vegetarians”). All this MRC-funded research, which is focused mainly on cardiovascular diseases, bone and joint health, and gastro-intestinal diseases, is completely dependent on continued ability to link the whole EPIC-Oxford cohort with the records from HES. The study is needed to improve understanding of the effects of diet on health and thus inform advice to governments, health professionals and the public about dietary choices to maximise the potential for long-term good health. Further aims include examining the roles of other lifestyle factors (including shift-work) and of endogenous hormones in relation to health. Many papers on diet and cancer risk have been published and now the availability of the HES data has enabled the extension of the research such as in the study's recent papers on ischaemic heart disease, diverticular disease and cataracts. The study’s overall aim is to provide reliable evidence on choices people can make in adult life to help increase their chances of staying healthy into old age. Further information can be found on the study website www.epic-oxford.org.

Study participants’ records are linked electronically to Hospital Episode Statistics for information on cause-specific hospital admissions, for example cancer diagnoses, cardiovascular disease, joint replacements and fractures. This is to examine the relationships between dietary, lifestyle and other potential risk factors with subsequent health. The aim is to contribute to knowledge of the epidemiology and aetiology of common diseases and other causes of hospital admissions. One of the primary outcomes is cause of mortality so continued receipt of this data is required.

Benefits: Diet has been identified as the number one cause for the burden of disease worldwide, and by providing new evidence on the impact of diet on health EPIC-Oxford will contribute to reducing the work and cost to the NHS of diet-related ill-health.

The aim of EPIC-Oxford is to improve information on diet in relation to the risk of cancer and other chronic diseases, which offers huge potential for improvements in public health in the UK. The results are published in peer-reviewed publications and presented at conferences, and are also reported through national media. Over 500 peer-reviewed publications, mostly on diet and cancer, have included data from EPIC-Oxford: see http://www.epic-oxford.org/publications/.

EPIC-Oxford’s research relates directly to the health of 1.2 million people in the UK who follow vegetarian diets (NHS 2014). The long-term effects on health of a vegetarian diet are not well understood, and little is known about the health effects of a vegan diet. Previous research has demonstrated lower risks of ischaemic heart disease, stomach cancer and perhaps haematological cancers in vegetarians compared with non-vegetarians (Crowe et al 2013, Key et al 2009, 2014), but understanding of these relationships is incomplete. Further research is needed to assess both the potential beneficial effects of a vegetarian diet and also possible hazards associated with low intakes of some nutrients, such as protein, long-chain n-3 fatty acids, vitamin B12, vitamin D and calcium (particularly in vegans). As well as peer-reviewed scientific publications, the EPIC-Oxford website (www.epic-oxford.org) will be used to describe all findings, with lay summaries of findings when appropriate, copies of abstracts, and links to pdfs of full papers. The website provides information both for study participants and for a wider audience in the UK and worldwide and where appropriate we will also communicate with the NHS because the research will provide information to underpin their advice, e.g. as on their website: http://www.nhs.uk/Livewell/Vegetarianhealth/Pages/Goingvegetarian.aspx

EPIC-Oxford will directly benefit health care through the NHS by providing clinicians and other NHS health care professionals with up-to-date evidence-based guidance on the effects of diet on long term health and the risk of death. This will improve clinical health care and inform planners and policy makers to address demands on health and social care in the present and the future.

Target dates are ongoing.

Source: NHS Digital.