NHS Digital Data Release Register - reformatted

Wolfson Institute Of Preventive Medicine projects

110 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).


🚩 Wolfson Institute Of Preventive Medicine was sent multiple files from the same dataset, in the same month, both with optouts respected and with optouts ignored. Wolfson Institute Of Preventive Medicine may not have compared the two files, but the identifiers are consistent between datasets, and outside of a good TRE NHS Digital can not know what recipients actually do.

Psychiatric Morbidity and Violence in England and Wales — DARS-NIC-272668-H4M3S

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 - s261 - 'Other dissemination of information'

Purposes: No (Academic)

Sensitive: Non-Sensitive

When:DSA runs 2020-01-24 — 2022-02-02

Access method: One-Off

Data-controller type: QUEEN MARY UNIVERSITY OF LONDON

Sublicensing allowed: No

Datasets:

  1. Adult Psychiatric Morbidity Survey
  2. Adult Psychiatric Morbidity Survey (APMS)

Objectives:

The Centre for Psychiatry at Queen Mary University of London (QMUL) is seeking to use the Adult Psychiatric Morbidity Survey (APMS) 2014 data to extend and augment existing academic work around the epidemiology of violence that uses the 2000 and 2007 datasets. This work will ensure up-to-date knowledge of the intricate link between mental disorder and violence with the population of England and Wales.

This application is to make use of the Adult Psychiatric Morbidity Survey, 2014, a research dataset held by UKDS relating to prevalence of mental disorder in the UK population for the purposes of conducting research into the epidemiology of violence and mental disorder in the UK, suitable for publication in academic peer-reviewed journals. It is justified under two sections of the GDPR:

a) Article 6 (1)(e) - a legitimate public interest, on the basis that a greater understanding of the causes and predictors of violence can aid preventive measures to reduce the burden of violence on the population; and
b) Article 9 (2)(j) - in the public interest for scientific research purposes.

The study team confirm that there are no moral or ethical issues in the use of this dataset as the data has already been collected and epidemiological research published based upon it, and also that there will make no efforts to link the data to other datasets or to de-anonymise individuals.

The data-set requested is the fourth repetition of a population-level investigation of mental disorder that has taken place every 7 years since 1993. It represents one of the largest and most inclusive data-sets relating to the prevalence of mental disorder, service use and negative outcomes, including violence, in the world.

This work is a continuation of a programme of work begun by two of the research team in a National Institute for Health Research (NIHR) funded Programme of research (Improving risk management for violence in mental health services: a multimethods approach: RP-PG-0407-10500) that ran between 2008 and 2014.

Several of the authors have already published work relating to the key research questions based on the 2000 and 2007 APMS datasets (Coid et al., 2006; Bhui et al., 2009 - fuller reference list available at request), but there is a public interest in updating this work to ensure the findings are robust over time and relevant to the current social context.

Data Subjects

This data-set comprises demographic and mental health screening questionnaire data on 7,528 individuals sampled from the UK household population, with additional clinical data on a subset of 630 individuals who met criteria for at least one mental disorder.

Data Analysis

The processing activities will be conducted along five work streams: i) longitudinal trends in violence ; ii) alcohol use and violence; iii) affective symptoms of borderline personality disorder, iv) risk factors within psychosis in the general population; and v) intimate partner violence and bullying.

Workstream 1: Longitduinal Trends in Violence

Evidence from other sources suggests that violence in England and Wales has declined over the past decade. This study aims to investigate hypothesised risk factor variables associated with self-reported violence in each survey and to observe their decline over time based on a combination of the 2000, 2007 and 2014 data-sets. These factors will include measures of psychiatric morbidity and social and demographic risk factors, as used in previous studies.

Workstream 2: Alcohol and Violence

Previous research using the 2000 and 2007 APMS data-sets (Freestone et al., 2019) has shown a linear relationship between alcohol use and likelihood of both perpetration of violent incidents and victimisation. This finding duplicates previous work by Public Health England suggesting that annually up to 20% of the population are negatively impacted by drinking (Benyon et al, 2019). This study will seek to test two core hypotheses:

1. Does the linear relationship between alcohol use and the likelihood of violence perpetration observed in previous cohorts hold true in the 2014 study?
2. Do demographic risk factors such as age, social status and income affect the relationship between alcohol and violence?

Workstream 3: Affective symptoms of borderline personality disorder

This study will use the categorical diagnosis and criteria items of borderline personality disorder to investigate the associations with dependent continuous variables of affective and anxiety disorder measures using the Clinical Interview Schedule-Revised (CIS-R) and psychotic symptoms in the Psychosis Screening Questionnaire (PSQ). It will require access to these diagnostic screen variables at both phases of interview as well as demographic variables that may affect this relationship and negative outcome measures such as violence, homelessness and financial difficulties.

Workstream 4: Modelling risk factors across the Spectrum of Psychosis in the General Population

This study will utlise both the phase 1 and phase 2 data. Participants will be divided into 5 subgroups using the (PSQ), and those who receive a diagnosis of clinical psychosis in phase 2 to create the population “spectrum”. Subgroups will range from the following: 5 (clinical diagnosis of psychosis), 4 (scores of 4-5 PSQ, excluding any from 5), 3 (scores of 2-3 PSQ), 2 (score 1), 1 (score 0). A statistical model will be used in which the spectrum is the dependent variable and a range of putative risk factors for psychosis are the independent variables to test linearity and extra-linearity across the spectrum. Independent variables will include demography, comorbid psychopathology including substance misuse, social environment, and traumatic risk factors.

Workstream 5: Violence exposure, physical health and mental health

It is well reported that the potential impact of exposure to incidents of violence (i.e. intimate partner violence, child maltreatment), in all its forms, on the individual and society is a serious public health issue. Exposure to victimisation is well documented as increasing the risk of mental and physical health problems (Arseneault 2018; Hughes et al 2017; Simmons, Knight, & Menard, 2018). Furthermore, studies also suggest that there is an association between mental and physical health (Nabi et al., 2008, Surtees et al., 2008).

This work-stream aims to investigate the relationship between exposure to violence (i.e. trauma, neglect and intimate partner violence) and physical health and mental health problems. It will address this via four research questions:

1. Do common mental health disorder symptoms (i.e. disturbances in sleep, fatigue and worry) mediate the relationship between violence (neglect, trauma, and intimate partner violence) and physical health problems?
2. Does childhood trauma and neglect moderate the relationship between mental health problems (i.e. bipolar disorder) and physical health problems?
3. Does intimate partner violence contribute to the relationship between childhood trauma and neglect and physical health?
4. Does intimate partner violence contribute to the relationship between childhood trauma and neglect and mental health?

To answer these research questions, the study will conduct an analysis of the APMS 2014 data-set, usually in combination with the 2000 and/or 2007 to provide a longitudinal analysis of trends at the population level. This data-set is pseudonymised and no linkage with other data-sets or personal information will be possible or necessary as part of this project. Usage of summary or aggregate data relating to this data-set is unfortunately not possible as several of the analyses proposed require the use of 'comparable' variables across data-sets (e.g. 2000 and 2014) and/or inferential statistical methods such as regression or path analysis.

The study team anticipate that the analysis stage of this project will take approximately three years, after which academic archiving policies require that the data be retained in an archive format for a further 7 years in compliance with the need to retain academic data for further scrutiny following publication of results.

Processing will be conducted by the Centre for Psychiatry, Wolfson Institute for Preventive Medicine, School of Medicine and Dentistry, Queen Mary University of London. Data will be held securely by the Barts Cancer Centre, which is also a part of the medical school and provides secure network and data storage services to the Centre of Psychiatry within the Wolfson Institute as well as Barts Cancer Institute. Data will be stored using the remote server that allows secure storage of data for remote analysis.

The sole data controller and processor for this purpose will be Queen Mary University of London.

Expected Benefits:

The study team are proposing a programme of epidemiological research rather than audit or clinical work so the benefits are not readily quantifiable as deliverables with a specified date. However the anticipated benefits will include:

1. Identification of differential pathways in the development of physical health problems in the presence of mental health problems that will benefit NHS integrated care services specifically, as well as secondary care services for mental disorders.

2. A better understanding of the relationship between violence, mental and physical health and their implications for policies and interventions. This will be of interest to commissioners as well as public health bodies and the police.

Within each workstream there are some specific deliverable benefits:

Workstream 1 (Fall in Violence)

This again depends on the nature of the outputs and whether they support the current hypotheses of the researchers. However, if they do the benefits could be considerable. This is a naturalistic study of a fall in violence. It may indicate new areas of investigation if subgroups can be identified who have shown a marked decline. It is possible it could show subgroups with increase, even though the overall trend is downwards. These subgroups may need targeted interventions.

Workstream 2:

Alcohol has now been robustly shown to be associated with harm to others (Benyon et al., 2019) and the study team have conducted preliminary work using earlier datasets that replicates this finding (Freestone, Igoumenou Coid & Bhui, 2019), and additionally suggests that the link between alcohol use and violence is not affected by personal income, challenging the accepted knowledge that pricing initiatives will reduce alcohol-related violence. However, the study team are seeking to replicate this finding and require a more recent dataset to translate these findings into policy recommendations for government bodies that can help reduce alcohol-related violence in the community.

Workstream 3

The notion that BPD is primary an affective disorder is not new but has been steadily resisted in the mainstream for many years. s.If it were convincingly demonstrated that BPD is primarily a disorder of mood then this would lead to new approaches to intervention for these patients. The key to advancing the message would be a dissemination strategy involving service users – the study team plan to do this by presenting the results collaboratively at conferences that encourage or prioritise service user involvement (e.g. The British and Irish Group for the study of Personality Disorder - https://bigspd.org.uk/ )

Workstream 4:

The findings will need to reach clinicians who see patients with psychotic experiences but who do not present with full picture of clinical psychosis, including early intervention services. The study team will do through targeted dissemination of the results through clinical societies and conferences where such clinicians (as well as patients) are regular attendees, e.g. the International Society for the Psychological and Social approaches to Psychosis, ISPS - http://www.isps.org/).

Workstream 5:

In addition to the current network of collaborators that researchers at the Centre of Psychiatry have ( Kidscape, Muslim Youth helpline, and MIND), other organisations such as ‘Standing together’ (domestic violence charity) will also be targeted. The summaries will assist with the dissemination of the findings from this project and will allow engagement and networking to optimise the impact of this work. This engagement will assist in reaching practitioners, policy makers and those who work with victims and perpetrators of violence.

Outputs:

All workstreams will be produced as a result of the data processing.
The data processing will result in research outputs comprising:
a. Submissions to peer reviewed journals
b. Presentations at national and international academic conferences
c. Discussions through national and international associations and clinical interest groups

The study team anticipate that each workstream will produce at least one academic paper relating to the key research question(s). The findings will also be disseminated via academic seminars, at national and international conferences (including the Royal College of Psychiatrists Division of Forensic Psychiatry conference and the British Psychological Society's annual Forensic Psychology conference) and the annual East London Research Day held in November of each year.

A summary findings report can be provided to stakeholders at the end of the project (September 2022).

All work streams will contain only high-level aggregate data (i.e. whole sample or sub-sample descriptive) or inferential statistics (i.e. model coefficients with p values) will be contained in any outputs. No sub-groups with < 5 participants will be reported.

All workstreams will comprise a programme of epidemiological research that is geared towards researchers working on the topics of mental health and violence. The primary outputs of this work will be in the form of peer-reviewed academic articles submitted to recognised, impact factor journals. Where possible on the basis of publication agreements, these will be open access and/or accepted drafts will be made open access via the Queen Mary repository.

Some workstreams require a different approach: Workstreams 1,2, and 5 have a public health focus whereas 3 and 4 are more technical enquiries relating to nosological research in psychiatry.

Workstreams 1 ,2 and 5

The aim will be to publish the first paper from this study in a high impact journal. It may be attractive to a US psychiatric journal because the fall in violence, despite what many believe, and newspapers inform, extends to most countries, including the US and even developing countries with very high rates. There can be no precise answer to this question until the results are available. If there are findings that suggest that violence has fallen among those with mental disorders, or if the change is not due to this subgroup of the population, this is very important for psychiatry. If the findings suggest it is due to demographic changes and patterns of alcohol use, for example, then it will determine a different publication strategy.

Findings from these work-streams will also be disseminated through the research and clinical groupings around the Centre for Psychiatry, for example:

- The Queen Mary and East London NHS Foundation Trust Academic afternoons, occurring monthly and open to Service users.
- Where findings relate to specific patterns of violence or victimisation associated with particular ethnic or cultural groupings, these will be raised with the Synergi collaborative Centre (https://synergicollaborativecentre.co.uk/) for publicisation and debate.

Workstream 3:

This study will lead to papers to be published in journals specialising in general psychiatry, affective disorders and personality disorders. It is important to consider that this is a specialist paper which relates to diagnosis. BPD is categorised as a personality disorder. This study suggests it may be an affective disorder (based on previous analysis using 2000 and 2007 surveys). There must be a careful dissemination plan because, if the preliminary findings are supported, this goes against conventional thinking in psychiatry and psychology.

Workstream 4:

This is a highly technical statistical approach to investigating the distribution of psychotic-like experiences in the household population and any dissemination strategy must take an appropriate approach. Initial papers will be primarily for a specialist audience.

Allowing a year for data analysis and write-up, then journal submission the study team anticipate the outputs will appear between 18 and 24 months from the date of receipt of the data (February 2020).

APMS low numbers and suppression
In order to protect patient confidentiality in publications resulting from analysis of APMS data users must:
• guarantee that any outputs made available to anyone other than those with whom this agreement is made, will meet required standards, including the guarantee, methods and standards contained in the Code of Practice for Official Statistics (http://www.statisticsauthority.gov.uk/assessment/code-of-practice/index.html) and the ONS Statistical Disclosure Control (https://gss.civilservice.gov.uk/statistics/methodology-2/statistical-disclosure-control/) for tables produced from surveys;
• apply methods and standards specified in the Microdata Handling and Security Guide to Good Practice (http://www.data-archive.ac.uk/media/132701/UKDA171-SS-MicrodataHandling.pdf) for disclosure control for statistical outputs

Processing:

This study will involve no data flow into NHS digital.

This study requires use of the Adult Psychiatric Morbidity Survey 2014, which is a cross-sectional dataset containing pseudonymised information about participants to a large population-level study with no participant-identifiable information.

After receipt by QMUL, data will be securely held on a secure server. After the conclusion of this project, data will be archived by the University for a period of seven years, then securely deleted - subject to appropriate agreements with NHS Digital being in place to allow for retention of this data.

Data will be stored on a secure server operated by the Barts Cancer Centre at Queen Mary University of London which operates on a single-user, dual-authentication password protected system.

Data processing will be conducted by academic or research staff holding substantive, honorary or emeritus contracts with Queen Mary University of London only. Processing will be restricted to the statistical analysis of data using an approved list of software packages, including: R, STATA and SPSS.

At no stage will raw data leave the secure server: only aggregate-level data (summary, descriptive data and outputs of statistical analysis) in Microsoft Word or Excel format will be produced as a result of the analysis and stored outside the server.

No data linkage is being proposed.

The study team confirm there is no requirement here to re-identify participants for any purpose.

All those involved with data processing will be substantive employees of the data processor and will be expected to have completed the NHS Health for England Data Security Awareness (NHSD) Level 1 Training course at minimum before access is granted.

All those accessing the data must use two-factor authentication via their work email address

The APMS dataset will be received in a pseudo-anonymised format that will make identification of individuals impossible to those not involved with the original data collection. No linking of the dataset to 'live' health records or any other data sources is proposed.


MR589 - UKCCCR TRIAL OF BREAST SCREENING IN YOUNG WOMEN — DARS-NIC-148484-PSL6Q

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y, Identifiable (Section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, Section 42(4) of the Statistics and Registration Service Act (2007) as amended by section 287 of the Health and Social Care Act (2012), Health and Social Care Act 2012 – s261(7)

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2017-05-02 — 2020-11-01 2016.04 — 2017.05.

Access method: Ongoing, One-Off

Data-controller type: QUEEN MARY UNIVERSITY OF LONDON

Sublicensing allowed: No

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Scottish NHS / Registration
  4. MRIS - Flagging Current Status Report
  5. MRIS - Members and Postings Report

Objectives:

The aim of this study is to determine the effect on mortality from breast cancer of mammographic screening in women starting ages 40-41, compared with starting at age 50 as in the current national breast cancers diagnosed in the trial population to predict outcomes. Data Access is restricted to those names in section 7 of this agreement. Any changes will be notified to the HSCIC

Yielded Benefits:

Expected Benefits:

This Agreement permits the secure retention of the data only and no other processing.

Outputs:

This Agreement permits the secure retention of the data only and no other processing.



No new outputs will be produced under this Data Sharing Agreement.

Processing:

Under this Agreement, the data may be securely stored but not otherwise processed. No new data will be provided by NHS Digital under this Agreement.

The study data, including data provided by NHS Digital under previous agreements, are currently held by Queen Mary University of London.


Project 3 — DARS-NIC-148229-QC5WK

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y

Legal basis: Section 251 approval is in place for the flow of identifiable data, Approved researcher accreditation under section 39(4)(i) and 39(5) of the Statistical Registration Service Act 2007

Purposes: ()

Sensitive: Sensitive

When:2017.09 — 2017.02.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Scottish NHS / Registration

Objectives:

The data supplied by the NHS IC to Wolfson Institute of Preventative Medicine will be used only for the approved Medical Research Project MR710.


Project 4 — DARS-NIC-147743-W4JNH

Type of data: information not disclosed for TRE projects

Opt outs honoured: Y

Legal basis: Section 251 approval is in place for the flow of identifiable data

Purposes: ()

Sensitive: Sensitive

When:2016.04 — 2016.11.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Scottish NHS / Registration

Objectives:

The data supplied by the HSCIC to Wolfson Institute of Preventive Medicine will be used only for the approved medical research project - MR170 Women with Benign Breast Disease


MR39 - SMOKING STUDY - MEN ATTENDING BUPA MEDICAL CENTRE — DARS-NIC-148331-5F2FS

Type of data: information not disclosed for TRE projects

Opt outs honoured: No - data flow is not identifiable, Y, Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Other - GDPR does not apply solely to the deceased, Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (Academic)

Sensitive: Sensitive

When:DSA runs 2019-09-26 — 2022-09-25 2019.03 — 2016.11.

Access method: One-Off, Ongoing

Data-controller type: ST GEORGE'S, UNIVERSITY OF LONDON, ST. GEORGE’S HOSPITAL MEDICAL SCHOOL

Sublicensing allowed: No

Datasets:

  1. MRIS - Members and Postings Report
  2. MRIS - Cause of Death Report
  3. MRIS - Cohort Event Notification Report
  4. MRIS - Scottish NHS / Registration
  5. MRIS - Flagging Current Status Report

Objectives:

This BUPA cohort study was set up to look at risk factors for cancer and cause specific mortality, with an emphasis on the risks of smoking.

The purpose of this request is to continue to receive information on the deaths of men who are part of the BUPA research cohort. This cohort consisted of 22,000 men aged 35-64 years who attended the British United Provident Association (BUPA) medical centre in London for a comprehensive medical examination between 1975 and 1982. The data on mortality and cancers has been used to conduct both cohort and case control studies resulting in over 32 papers being published in peer review journals. The areas of research covered have included the health effects of active and passive smoking, screening, cancer and nutrition, cancer and infection, serum cholesterol in relation to Ischaemic Heart Disease (IHD) and cancer, apolipoproteins, blood pressure and stroke, cardiovascular screening and osteoporosis. Queen Mary University wish to continue to receive the mortality data in order to continue their research into risk factors for mortality, mainly from ischemic heart disease or cancer.

The original purposes of the study were:

1. To continue a prospective epidemiological study of the association between Carboxyhemoglobin (COHb) levels and mortality from Coronary Heart Disease (CHD) and lung cancer.

2. To investigate the interrelationships of COHb levels with risk factors of CHD, and estimate their value in predicting CHD.

3. To clarify some of the conflicting observations concerning the relationship between risk of lung cancer and coronary heart disease in relation to self-described inhaling habits.

4. To store serum and urine samples from men recruited into the study so that substances which may be markers of or aetiologically linked to lung cancer or coronary heart disease can be measured in these samples on a case-control basis after being notified of deaths.

The BUPA study was originally funded by the Medical Research Council and BUPA. Now that recruitment has ended data analysis is conducted by university funded staff without additional external funding.

Yielded Benefits:

The BUPA study has been a very valuable research resource providing evidence to support a range of public health interventions. Early work providing evidence on the link between passive smoking and both lung cancer and heart disease was extremely influential in the government deciding to ban passive smoking from public places (The dose-response relationship between cigarette consumption, biochemical markers and risk of lung cancer,). Additional work on the effect of tar yield of cigarettes also influenced the move to low tar cigarettes. (Mortality in relation to tar yield of cigarettes: a prospective study of four cohorts, Relative intakes of tar, nicotine, and carbon monoxide from cigarettes of different yields.) The BUPA study was also one of the first studies to establish the link between serum cholesterol and subsequent heart disease (Systematic underestimation of association between serum cholesterol concentration and ischaemic heart disease in observational studies: data from the BUPA study) and the link between serum homocysteine and subsequent heart disease (Homocysteine and ischemic heart disease: results of a prospective study with implications regarding prevention.) and between apolipoproteins and heart disease (Apolipoproteins and ischaemic heart disease: implications for screening.). All these findings have implications for screening for heart disease and will improve the prevention of the 73,000 deaths from heart disease that occur in the UK each year. The BUPA study has also provided information on screening for cancers, with the finding that Insulin-like growth factors are not useful in screening for cancer (Insulin-like growth factors and cancer: no role in screening. Evidence from the BUPA study and meta-analysis of prospective epidemiological studies.) and that PSA is useful in screening for prostate cancer (Prospective observational study to assess value of prostate specific antigen as screening test for prostate cancer.), but that free PSA is not (Adding free to total prostate-specific antigen levels in trials of prostate cancer screening).Prostate cancer is the second most commonest cause of death from cancer in men and therefore any improvements in screening will impact on the lives of large numbers of men. In summary data from the BUPA cohort have been of considerable importance in the field of epidemiology and preventive medicine; particularly in the field of cancer prevention and cardiovascular disease prevention. There have been over 50 publications, the last one as recently as April 2017 (Wald DS et al. Mortality from aortic stenosis: prospective study of serum calcium phosphate. J Int Med 2017;281:407-411).

Expected Benefits:

The Wolfson Institute's work on establishing the link between passive smoking and lung cancer and heart disease using the BUPA database was extremely influential in the government deciding to ban passive smoking from public places. This clearly affects the health of the whole population.

The BUPA study established the link between Prostate-Specific Antigen (PSA) and the risk of developing prostate cancer in men (Prospective observational study to assess value of prostate specific antigen as screening test for prostate cancer; Nov 1995.). The Wolfson Institute is currently collaborating with Professor Hans Lilja (Oxford University) and Dr Brian Shine trying to improve methods of screening for prostate cancer to avoid over-treating men with prostate cancer. This collaboration consists of Oxford providing the technical expertise on stored serum analysis, the Wolfson Institute analysing the results and discussing the interpretation of these with Oxford. Individual patient data is not released to Oxford. Prostate cancer is the most common male cancer and over 41,000 men in the UK are diagnosed with it each year. If a new screening test is developed this would improve the outlook not only for the 41,000 men diagnosed with prostate cancer every year in the UK , but also it would avoid large numbers of men becoming extremely anxious due to being told they are at a high risk of prostate cancer by less accurate screening tests.

Aortic stenosis is a serious heart condition with no known means of prevention. Death follows symptoms of heart failure in most cases unless the valve is surgically replaced. Aortic stenosis is caused by the build up of calcium (a mineral found in the blood) on the aortic valve (flaps of tissue which regulates blood flow) leading to obstruction of blood flow from the heart. Recent work on analysing data from the BUPA study on men with aortic stenosis suggests that lowering plasma phosphate or calcium could prevent calcium phosphate deposition on heart valves. (Mortality from aortic stenosis: prospective study of serum calcium and phosphate,2017). This work provided sufficient evidence for the MRC to fund a randomised trial as a pilot trial to determine whether the progression of aortic stenosis can be prevented using sevelamer. If this is successful it will radically change the management of patients with aortic stenosis, potentially removing the necessity of surgery.

Outputs:

The main aims of the study were:
1. To continue a prospective epidemiological study of the association between COHb levels and mortality from coronary heart disease and lung cancer. This was achieved with over 22,000 men being recruited into the BUPA cohort from 1975 to 1982.

2. To investigate the interrelationships of COHb levels with risk factors of CHD, and estimate their value in predicting CHD.
This was achieved with the following papers being published :
a.Carbon monoxide in breath in relation to smoking and carboxyhaemoglobin levels; May 1981.
b. Serum cotinine levels in pipe smokers: evidence against nicotine as cause of coronary heart disease; Oct 1981.

3. To clarify some of the conflicting observations concerning the relationship between risk of lung cancer and coronary heart disease in relation to self-described inhaling habits.
The following papers have been published:
a. Prospective study of effect of switching from cigarettes to pipes or cigars on mortality from three smoking related diseases; June 1997.
b. The dose-response relationship between cigarette consumption, biochemical markers and risk of lung cancer; 1997.

4. To store serum and urine samples from men recruited into the study so that substances which may be markers of or aetiologically linked to lung cancer or coronary heart disease can be measured in these samples on a case-control basis after being notified of deaths.
This has been achieved – the BUPA cohort information and blood samples have been securely stored for over 40 years (since 1976). Research on a case-control basis continues to be performed on these data , evidenced by the following 9 publications: -
a.Insulin-like growth factors and cancer: no role in screening. Evidence from the BUPA study and meta-analysis of prospective epidemiological studies; July 2006.
b.Chlamydia pneumoniae infection and mortality from ischaemic heart disease: large prospective study; July 2000.
c.Adding free to total prostate-specific antigen levels in trials of prostate cancer screening; Feb 2000.
d. Homocysteine and ischemic heart disease: results of a prospective study with implications regarding prevention; April 1998.
e. Helicobacter pylori infection and mortality from ischaemic heart disease: negative result from a large, prospective study; Nov 1997.
f. Prospective observational study to assess value of prostate specific antigen as screening test for prostate cancer; Nov 1995.
g. Serum albumin and mortality in the BUPA study. British United Provident Association; Feb 1994.
h. Apolipoproteins and ischaemic heart disease: implications for screening; Jan 1994.
I. Association between infection with Helicobacter pylori and risk of gastric cancer: evidence from a prospective investigation; June 1991.

QMUL are currently analysing data concerning the prediction of the occurrence of clinically detected prostate cancer during the following 30 years. It is expected that the results from this study will be finalised in 2019. The value of the BUPA cohort is that any new hypothesis can be investigated extremely quickly as the data and serum samples are all stored at the Wolfson Institute of Preventive Medicine which is part of Queen Mary University London.

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

Processing:

NHS Digital supplied historically the date and cause of death to QMUL. This mortality data was linked to other clinical information on these men using the study ID numbers. QMUL used this information to create case-control data sets where cases include all men who have died from a specific cause and the controls are those men who have not died from that cause. Risk factors for the disease are then examined amongst these case control data sets. Dates of death and birth were not used – only age at death and age at time of collecting the clinical information.

This agreement will only flow pseudonymised data back to QMUL. The Study no longer hold any identifiers for the cohort. NHS Digital will share back to QMUL the following, BUPA unique member ID and month and year of DOB along with exits/re-entries, Cancer registration details (not registration number as this is identifiable) and fact/date/cause of death.

The data will not be linked to any other information about the participants. QMUL have already collected all information required about the cohort and will not be linking to any additional datasets.

The data on mortality received will be coded and stored in the BUPA cohort database on a secure fire-walled server at the Wolfson Institute of Preventive Medicine.

The data can be accessed only via passwords by three members of staff who are all substantive employees of the QMUL. No identifying information is released. The data will not be linked to any other information about the participants.

Data will only be accessed and processed by substantive employees of Queen Mary University London and one member of the team who is working under an honorary contract at QMUL.

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.


Project 6 — DARS-NIC-148066-2B6LS

Type of data: information not disclosed for TRE projects

Opt outs honoured: N

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

Purposes: ()

Sensitive: Sensitive, and Non Sensitive

When:2016.04 — 2016.08.

Access method: Ongoing

Data-controller type:

Sublicensing allowed:

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report

Objectives:

To determine the value of preventive angioplasty (a procedure in which fine balloons are positioned and expanded within coronary arteries) to dilate all identified significantly narrowed coronary arteries among patients having therapeutic angioplasty to treat a myocardial infarction; ie angioplasty limited to unblocking the artery causing the myocardial infarction. The primary aim is to determine whether preventive angioplasty undertaken at the time of treating the artery responsible for the myocardial infarction reduces the incidence of the combined endpoint of coronary death, non−fatal myocardial infarction and refractory angina. The secondary aims are: 1. To determine and quantify the safety of preventive angioplasty among patients undergoing therapeutic angioplasty for an acute myocardial infarction. 2. To undertake an economic evaluation comparing the cost to the NHS of preventive PCI. 3. To undertake a quality of life assessment in patients randomised to each treatment strategy.