NHS Digital Data Release Register - reformatted
University of Cambridge
Opt outs honoured: Y
Basis: Section 251 approval is in place for the flow of identifiable data
Format: Identifiable Sensitive
How often: Ongoing
When: unknown — 11/2016
HSCIC Id: DARS-NIC-147874-HVBFB-v0.0
Data: MRIS - Cause of Death Report
Data: MRIS - Cause of Death Report
Data: MRIS - Cohort Event Notification Report
Data: MRIS - Cause of Death Report
Data: MRIS - Cause of Death Report
Data: MRIS - Cohort Event Notification Report
Data: MRIS - Cohort Event Notification 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 - List Cleaning 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 - Scottish NHS / Registration
Data: MRIS - Scottish NHS / Registration
Output: There have been over 1300 peer reviewed scientific publications from this study, with a number of findings making it into news. There are too many publications to list, but can be found at the website at http://www.srl.cam.ac.uk/epic/publications.shtml with news articles found at http://www.srl.cam.ac.uk/epic/news.shtml.
Results from this study have informed Department of Health public health initiatives (2010 ‘Small Change, Big Difference’ campaign), NICE and other clinical and public health policies and guidelines. The University of Cambridge also shares results from this study via extensive public engagement activities including regular Science Festival events and lectures to general public and charitable groups.
As well as continuing to analyse the data collected so far and publish on the health outcomes covered to date, the University of Cambridge have more recently collected objective data on cognition and hope to gather data on Dementia outcomes. Over 600,000 people in the UK suffer from dementia, costing over £17 billion a year. Dementia is such an important health issue, that the Prime Minister, David Cameron launched a challenge on Dementia on 26 March 2012 in order to speed up the progress in prevention and treatment. The MRC Dementias Platform UK (DPUK), a multi-million pound initiative that was developed and led by the Medical Research Council as part of the activity to meet this challenge. The EPIC-Norfolk study is a partner of DPUK and with the data collected to date and in the follow up planned for 2015-2018, will make EPIC-Norfolk a hugely powerful study of Dementia.
The University of Cambridge also plans to use the linkage data to investigate the healthier individuals in the cohort to be able to inform policies on healthy and successful ageing.
EPIC-Norfolk is an ongoing longitudinal study. The University of Cambridge received last HES update in 2015. The study continues to use outcome measures from HES data in publications and it is essential for the study to have up to date events for a number of reasons;
• Firstly, the statistical power of the analyses depend on the number of known events. Less common outcomes can only be studied with sufficiently long follow-up and event numbers.
• Secondly, EPIC-Norfolk has made multiple approaches to the cohort. Each approach is a new baseline and is necessary to have non-fatal events
• Thirdly, journals are unwilling to accept publications where the outcomes presented are too old since the missing information may effect the results and their interpretation.
Outputs will contain only aggregate level data with small numbers suppressed in line with the HES analysis guide.
The University of Cambridge communicate research findings to members of the scientific community through publication in a broad range (both specialist and more general, scientific and medical based) national and international peer-reviewed journals and at national and international conferences. Please find below selected conferences and a list of some the journals that EPIC-Norfolk (plus the international EPIC study or consortia using EPIC-Norfolk data) have published in.
Equally important is the dissemination of results outside the research community. The University of Cambridge communicate the results to the research participants via an annual newsletter. A list of recent newsletters can be found on our website at http://www.srl.cam.ac.uk/epic/newsletter_archive.shtml.
The EPIC-Norfolk research team also recognises the value and importance of public engagement and have made this an integral part of its research agenda. The primary objective is to inform the general public (all age ranges) on high quality research data collected by the EPIC-Norfolk researchers team relating to diet, lifestyle choices, ageing and health and also to promote awareness of healthy living. The secondary objective is to make science more accessible and better understood in society. A list of public events including activities designed for younger individuals presented at the Cambridge Science Festival for the past few years can be found at http://www.srl.cam.ac.uk/epic/publicevents.shtml.
In 2015, the EPIC-Norfolk researchers developed (and continue to manage) a web based system where other researchers taking part in the Cambridge festival could contribute their activities to be catalogued that could then be borrowed by schools and local community group setting. Information on this ‘library’ can be found at http://www.sciencefestival.cam.ac.uk/resources
The University of Cambridge also actively promote participant involvement in this research. The University of Cambridge set up an advisory panel in 2010 to act as a consultation group to advise us on the research. The EPIC-Norfolk Participant Advisory Panel (EPAP) has been involved in all aspects of the research project from designing health questionnaires, writing of lay summaries, participant information, dissemination of results and providing a lay perspective on potential projects being considered for the future. The panel met three times in 2015, details of the meetings can be found at http://www.srl.cam.ac.uk/epic/participant_panel_archive_2015.html. Further information on EPAP can be found at http://www.srl.cam.ac.uk/epic/participant_panel.html
The University of Cambridge held a public meeting to celebrate 20 years of EPIC-Norfolk research in 2013 . Details of this meeting and the posters presentations can be found at http://www.srl.cam.ac.uk/epic/20yr_meeting.shtml
Recent Selected Conferences where EPIC data has been presented
7-9 December 2015 nutrition society winter conference.
Oral presentation: "Total (food and supplement) n-3 PUFA intake is associated with lower Coronary Heart Disease mortality, independently of fish intake".
March 2015
American Heart Association Scientific sessions Lifestyle and Epidemiology
Science Festival Cambridge
Institute of Child Health London
GP Forum Norfolk
May 2015
International society for Atherosclerosis Scientific symposium
August 2015
European Society of Cardiology
September 2015
European Association for the Study of Diabetes
Nordic Epidemiology Conference
October 2015
Singapore/Cambridge Scientific symposium
November 2015
Netherlands Symposium on dietary saturated fats
Cambridge Denmark Symposium
2015
American Heart Association Scientific Sessions on Epidemiology and Lifestyle March 2015 Baltimore USA
Plenary invited Lecture on Optimizing Cardiovascular Health: examples from the EPIC-Norfolk study
17th International Symposium on Atherosclerosis May 2015 Amsterdam
Invited lectures on
• Epidemiology and prevention of Cardiovascular disease
• Cardiovascular disease risk prediction
Both presenting EPIC-Norfolk data
International Society of Cardiovascular Disease Epidemiology and Prevention, seminar Fiji June 2015
Cardiovascular disease Epidemiology and Prevention examples from EPIC-Norfolk
Cancer Research UK Researchers Scientific sessions Leeds July 2015
Population Research on Cancer aetiology and prevention: examples from the EPIC Norfolk study
Cambridge Science Festival March 12 2015 Cambridge
Vitamin D and health –findings from EPIC-Norfolk
University College London Institute of child Health March 2015 London
Ageing and lifecourse - data from EPIC-Norfolk
Poster presentation at the Nutrition Society's Summer Meeting in July 2015
2014
Oslo University Department of Medicine
Obesity and genetics – EPIC Norfolk findings
Karolinska Institute Stockholm April 2014
Is Ageing modifiable: findings from EPIC-Norfolk
CambridgeScience and Policy June 2014
Work shop on ageing – data from EPIC-Norfolk
ARVO – Association of Research into Vision and Ophthalmology (also presented 2011, 2012, 2013)
American association of Ophthalmologists (also presented in 2012, and 2013)
Nutrition Society meetings (also presented in 2007, 2011, 2013,)
Cardiovascular Research Trust (2014)
2013 and before
Royal College of Ophthalmologists 2013
Faculty of Public Health annual conference 2012
Vision 2020 UK in 2012
Oral presentation at ICDAM 2006 in Copenhagen
International Conference of Dietary and Activity Methods (2012 and 2006)
Hundreds of manuscripts on EPIC data have been published in journals. The most common journals in which manuscripts have been published are (number indicates number of manuscripts per journal):
109 Int J Cancer
80 Cancer Epidemiol Biomarkers Prev
72 Am J Clin Nutr
61 Eur J Clin Nutr
50 Public Health Nutr
36 Int J Epidemiol
36 Br J Nutr
36 Am J Epidemiol
30 PLoS One
29 Nat Genet
26 Diabetologia
24 Cancer Causes Control
23 Br J Cancer
21 Hum Mol Genet
21 Eur J Epidemiol
20 Carcinogenesis
19 J Natl Cancer Inst
There have been many more publications in many other journals.
Activities: With the permission of the GPs, all patients on their registers born between 01/01/1918 and 31/12/1957 were invited to join EPIC. Those who consented were asked to provide information via questionnaires and undertake health checks. All participants attending the baseline health examination provided signed informed consent at inception of the study agreeing to provide lifestyle and health data and biological samples for this study and access to medical records. Participants provided signed informed consent again for subsequent attendance at follow up examinations in 1997-2005, in 2006-2011 and 2012-present. At each point the University of Cambridge have updated the consent process to be in line with the current guidelines. This included permission for access to medical records. The study has also received approval from the Norfolk and Norwich Ethics committee of each phase as well as clarification of previous permissions to be in line with current standards.
EPIC-Norfolk is a flagging study and data form HSCIC (and previously ONS) is restricted to the EPIC-Norfolk participants. All participants in the study have to date been followed up through routine data linkage for mortality with death certification by cause, and cancer incidence through cancer registration and linkage with hospital records, GP records and other disease registers. This has allowed for the follow up for a large range of health outcomes that are relevant to an ageing population. The data has been subjected to ongoing analysis to determine links between dietary and lifestyle factors and health outcomes.
All participants in the study have to date been followed up through routine data linkage for mortality with death certification by cause, and cancer incidence through cancer registration and linkage with hospital records, GP records and other disease registers. This has allowed for the follow up for a large range of health outcomes that are relevant to an ageing population. The data has been subjected to ongoing analysis to determine links between dietary and lifestyle factors and health outcomes.
Linkage strengthens the study by allowing the follow up of participants who drop out of the study due to health reasons or death. It also allows the validation of self-reported conditions such as Parkinson's disease, dementia or stroke. Access to death data provides information on mortality but is also used for administrative purposes to prevent inappropriately mailing to participants who have died.
Events identified through record linkage will be documented and linked with data collected from individuals on lifestyle so that the University of Cambridge can assess associations between lifestyle and subsequent health outcomes.
The University of Cambridge combines mortality data and Hospital Episode Statistics data to define outcomes for fatal and non-fatal incident diseases. For example, the University of Cambridge can define an outcome of heart disease using the same range of ICD 10 codes applied to both fatal events from death certificates and non-fatal events from hospital admissions.
Data from HSCIC is processed by a EPIC-Norfolk team within the Department of Public Health and Primary Care University of Cambridge School of Clinical Medicine, Cambridge. Data is not accessed outside the UK. On-going updates of data are necessary for the accurate follow up of participants.
Objective: The European Prospective Investigation into Cancer (EPIC) was established to examine the relationship between lifestyle, in particular, diet and physical activity, biological factors and health outcomes. Though EPIC is an international ten country collaboration, co-ordinated by the International Agency for Research into Cancer in Lyon, which is part of World Health Organisation, such that collaborating partners agreed a core protocol for the collection and standardisation of data throughout EPIC, each individual cohort is able to develop specialist areas for investigation. As part of this collaboration, data may be shared with the nine other centres but strictly in anonymised aggregated format. Anonymised data is also shared with other collaborators from recognised academic and research institutions. No identifiable data from HSCIC is processed or stored at any other site or location other than at the Department of Public Health and Primary Care University of Cambridge School of Clinical Medicine, Cambridge.
This application relates to the Norfolk component of EPIC (EPIC-Norfolk) and the follow-up on approximately 25,000 men and women aged 40-79 resident in Norfolk at the time of recruitment.
The scientific and public health strength of the population cohort is that through routine record linkage, the University of Cambridge are able to follow up the whole cohort who originally participated for health outcomes. Access to data only for the subset that, more than 20 years later are able to provide new signed informed consent will bias the follow up hugely, and make subsequent follow up and results impossible to interpret. The substantial investment of effort by participants over two decades in contributing to this research and increasingly valuable information from long term follow up of the whole population will be lost.
Non-fatal disease is an important area of the research and access to linked HES data is essential to analyse this. Many diseases cannot be studied using mortality data alone as the diseases do not cause a death and may only occasionally appear on death certificates. These would include diabetes, eye diseases such as glaucoma, bone diseases such as osteoporosis, frailty and sarcopenia, inflammatory bowel diseases and dementia. Hospital usage is another important area for future research.
Benefits: The University of Cambridge has already contributed substantially to clinical and health policy guidelines as detailed above. The University of Cambridge anticipates adding to the knowledge to improvements in preventing chronic disease and maintaining good health in later life in the next 5 years.
This is a long term study involving a huge amount of data and EPIC has a well-characterised cohort that has been shown to be comparable to the general UK population. EPIC hopes to continue to add to this rich database and further characterise the longitudinal trajectory of the population as it ages and examine determinants of healthy ageing as well as chronic disease.
Prevention depends on understanding of causes. We need a much better understanding of the biological mechanisms underlying disease and health; how these are influenced by the environment and what the potential population impact might be. There is increasing evidence for common pathophysiological pathways including glucose metabolism, inflammation, hormonal profile (thyroid and sex hormones) for ageing related conditions. In addition to chronic disease, we need to have a much better understanding of outcomes relevant to older populations such as functional health and quality of life. EPIC-Norfolk is a large long term prospective study that allows this approach.
Previous results from the EPIC study have informed Department of Health public health initiatives (2010 ‘Small Change, Big Difference’ campaign), NICE and other clinical and public health policies and guidelines. Findings are also shared through extensive public engagement activities including regular Science Festival events and lectures to general public and charitable groups.
Objective: This randomised study aims to determine:
1. What is the optimum interval between donations that maximises blood supply, maintains well-being, and avoids unacceptably increasing risk of iron deficiency/anaemia and its potential complications, for men and women?
2. If it is appropriate to tailor blood donation intervals to donors by their demographic, haematological, genetic and lifestyle factors?
The benefits of this study are twofold. Firstly, identification of donors that are likely to become anaemic following blood donation would enable NHS Blood and Transplant to allow such donors a longer period to recover their iron stores post-donation. Currently, such donors often fail their anaemia screening test at their next donation appointment and are temporarily prevented (or deferred) from donating blood; this often results in donors withdrawing completely from donating. Secondly, the ability to decrease donation intervals would enable NHSBT to collect more blood from the same number of donors.
For the purposes of the health status reports: The INTERVAL Data Manager will provide MRIS with NHS number and non-personal identifiable data held on the INTERVAL database (e.g. gender, month and year of birth). For the purposes of retrieving cause of death, the month and year of death may also be provided (if known).
For the purposes of retrieving missing NHS numbers: NHSBT (honorary) staff from the INTERVAL project team who have access to NHSBT’s national database will provide MRIS with personal identifiable data (e.g. name, date of birth and, where available, NHS No.). For the purpose of retrieving NHS No’s for those cases where it is not already known. MRIS will provide the retrieved NHS No’s back to the INTERVAL Data Manager.
Source: NHS Digital.