Literature DB >> 25424996

Suicide Information Database-Cymru: a protocol for a population-based, routinely collected data linkage study to explore risks and patterns of healthcare contact prior to suicide to identify opportunities for intervention.

Ann John1, M Dennis1, L Kosnes1, D Gunnell2, J Scourfield3, D V Ford1, K Lloyd1.   

Abstract

INTRODUCTION: Prevention of suicide is a global public health challenge extending beyond mental health services. Linking routinely collected health and social care system data records for the same individual across different services and over time has enormous potential in suicide research. Most previous research linking suicide mortality data with routinely collected electronic health records involves only one or two domains of healthcare provision such as psychiatric inpatient care. This protocol paper describes the development of a population-based, routinely collected data linkage study: the Suicide Information Database Cymru (SID-Cymru). SID-Cymru aims to contribute to the information available on people who complete suicide. METHODS AND ANALYSIS: SID-Cymru will facilitate a series of electronic case-control studies based in the Secure Anonymised Information Linkage (SAIL) Databank. We have identified 2664 cases of suicide in Wales between 2003 and 2011 from routinely collected mortality data using International Classification of Diseases, Tenth Revision, codes X60-X84 (intentional self-harm) and Y10-Y34 (undetermined intent). Each case will be matched by age and sex to at least five controls. Records will be collated and linked from routinely collected health and social data in Wales for each individual. Conditional logistic regression will be applied to produce crude and confounder (including general practice, socioeconomic status) adjusted ORs. ETHICS AND DISSEMINATION: The SAIL Databank has the required ethical permissions in place to analyse anonymised data. Ethical approval has been granted by the Information Governance Review Panel (IGRP). Findings will be disseminated through peer-reviewed publications, consultations with stakeholders and national/international conference presentations. The improved understanding of the prior health, nature of previous contacts with services and wider social circumstances of those who complete suicide will assist in prevention policy, service organisation and delivery. SID-Cymru is funded through the National Institute for Social Care and Health Research, Welsh Government (RFS-12-25). Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Entities:  

Keywords:  EPIDEMIOLOGY; PUBLIC HEALTH

Mesh:

Year:  2014        PMID: 25424996      PMCID: PMC4248097          DOI: 10.1136/bmjopen-2014-006780

Source DB:  PubMed          Journal:  BMJ Open        ISSN: 2044-6055            Impact factor:   2.692


Based on the general population. Includes all deaths through suicide, not only those known to mental health services. Based on routinely collected health and social care data linkage. Linkage across multiple domains. Most suicide data linkage studies are limited to only one or two domains of healthcare provision. Actual use can only be inferred from prescriptions issued.

Introduction

Every year approximately 800 000 people die by suicide worldwide, 1–2 in every 100 deaths. Prevention of suicide is a global public health challenge. Collaborative working across government departments, with a public health approach extending beyond mental health service care is essential.1 Global patterns and national trends in the incidence of suicide and its key risk factors change over time. The therapeutic and preventive challenges of understanding and responding to these changes are considerable. Vast amounts of personal data are routinely collected on a daily basis by health and social care systems around the world to support clinical management and patient care. Linking these data records for the same individuals across different services and over time offers a powerful, population-wide resource. Such integrated data sets have been used to study a range of health issues to identify risk and protective factors and to examine outcomes. The secondary use of these data has enormous potential in suicide research. Improved consideration of the prior health, wider social circumstances and points of access to services of all individuals who complete suicide can be achieved.2–4 Studies from the Nordic countries have demonstrated the usefulness of data linkage across register-based studies in suicide research.5–10 Others11–13 have demonstrated that collating and linking sets of routinely collected whole population-based data, such as General Practice (GP) records, outpatient data and inpatient activity, with mortality data enable more detailed analysis of risk factors for those people completing suicide. Most previous research linking suicide mortality data with routinely collected electronic health records involves only one or two domains of healthcare provision such as psychiatric inpatient care. In the UK, various systems exist to examine suicide deaths. The National Confidential Inquiry into Suicide and Homicide (NCISH) by people with Mental Illness focuses on suicide cases who were in contact with mental health services (approximately 25% of total) in the year prior to their deaths.3 However, this provides limited information on issues of suicide in the general population and may hamper the effectiveness of wider preventive efforts.1 In a recent report, NCISH14 examined aspects of primary healthcare prior to all suicides in England between 2002 and 2011; however, no linkage was made with data from other service providers such as emergency departments. Scotland has recently established enhanced data collection in relation to suicide, however, further development is needed in order for the Scottish Suicide Information Database (‘ScotSID’) to be able to examine healthcare pathways and contact with more than one health service;15 England does not currently have a dedicated repository for suicide data though studies have made use of the Clinical Practice Research Datalink (CPRD; http://www.cprd.com), which represents approximately 8.5% of the UK population from 600 general practices (GP's) in England.16 CPRD can be linked with data from the National Health Service (NHS) Hospital Episode Statistics (HES; http://www.hscic.gov.uk/hes) and mortality data from the Office of National Statistics (ONS; http://www.ons.gov.uk) but has limited emergency department data. SID-Cymru will access and link information on prior health, nature of previous contacts with services, and wider social circumstances of all those who complete suicide (known and unknown to mental health services) within the population of Wales via anonymised routinely collected electronic data held in healthcare and social data sets from the Secure Anonymised Information Linkage (SAIL) Databank (http://www.saildatabank.com).17 18 This brings together, links and anonymises the widest possible range of person-based data currently available in the UK. The SAIL Databank was originally set up by the Health Information Research Unit (HIRU) at the College of Medicine at Swansea University. SID-Cymru is part of the research programme related to the Health e-Research Collaboration UK (HeRC UK), led by the Medical Research Council (MRC) and based in the Centre for the Improvement of Population Health through e-Records Research (CIPHER). CIPHER is a UK Clinical Research Collaboration (UKCRC) Public Health Research Centre of Excellence set within the College of Medicine at Swansea University. SID-Cymru will provide timely robust data to inform the future strategic direction of and the first step in designing and evaluating effective interventions to prevent suicide. It will use the International Classification of Disease, Tenth Revision,19 (ICD-10) definitions and instructions for classifying causes of death, which will allow for comparisons with other countries and thus support research of relevance globally. An emphasis will be given to issues where there are opportunities for intervention or where electronic data linkage confers an advantage to its investigation.

Aim

The main aim is to establish SID-Cymru as a population-based resource for studying factors and service contacts associated with all suicide deaths through routinely collected data linkage case–control studies. To identify, via the SAIL Databank, all those with ICD-10 codes for probable and possible suicide in Wales 2003–2011, and matched controls. To explore and address the methodological issues relating to the development of this database of completed suicides, and the linkage of data across different data sets and settings. To investigate risk factors and trends for suicide, including: primary care diagnosis of depression; levels of treatment with antidepressants and trends in such treatment over time; rural and urban geography; educational attainment; levels of physical illness. To investigate settings and pathways of care where people are in contact with services in the year leading up to their suicide across the whole population and in specific groups such as the elderly.

Methods and analyses

Design

SID-Cymru will facilitate a series of electronic population-based, routinely collected data linkage case–control studies on completed suicide in Wales between 2003 and 2011. Wales has a population of 3.1 million20 and is part of the UK. There are approximately 32 000 deaths of Welsh nationals registered each year of which around 300 (approximately 1%) are registered as suicides.21

Data source

SID-Cymru will be assembled within the SAIL Databank,17 a growing resource that already holds over a billion anonymised records from 13 databases, which can be anonymously linked at the individual record level.18 The SAIL Databank has been previously used for linkage of routine data.22–26 Within the SAIL Databank a split-file approach to anonymisation is used to overcome issues of confidentiality and disclosure in health-related data warehousing.18 Demographic data are sent to a partner organisation, NHS Wales Informatics Service (NWIS), where all identifiable information is removed; clinical data are sent directly to HIRU, where, for each data set within the SAIL Databank, an individual is assigned an encrypted Anonymised Linking Field (ALF). The ALF is used to link anonymised individuals across data sets, thus supporting the opportunity to conduct longitudinal analyses of an individual's journey through multiple health, education and social data sets.17 Additionally, Residential ALFs (RALFs) have been created for all residences in Wales and enables linkage of anonymised household and environment data with the health records of individual residents without the identity of the residences or residents being known to researchers.26 The primary study base will be the Welsh Demographic Service27 (WDS) hosted within the SAIL Databank. The WDS is a core data set available within the SAIL Databank and part of a set of services to manage administrative information (demographic data) for NHS patients in Wales. The WDS was introduced early in 2009 replacing a similar service known as the NHS Wales Administrative Register (NHS AR). The WDS data is collected from GP's via the Exeter System; more than five million individuals are currently present in the WDS data set within the SAIL Databank. The WDS is a register of all individuals who have at some point in time been registered with a Welsh GP or required some form of NHS healthcare provision in Wales. The electronic collation of WDS/NHS AR data originated in 1960, and is updated and maintained by NWIS,27 ensuring that address changes (within and out of Wales) and death notices are included in the register. The original (non-anonymised) version of the NHS AR has been used in the HIRU Matching Algorithm for Consistent Results in Anonymised Linkage (MACRAL), making the WDS/NHS AR the master list for all Welsh residents and using probabilistic matching to find the associated NHS numbers that are then encrypted into ALF's. Deaths in Wales should be registered within 5 days of the date of death (DOD). However, legislation in Wales means that when a coroner's inquest takes place, the death cannot be registered until the inquest is complete. Since the Office for National Statistics (ONS), the national agency where all deaths are collated, has no conclusive information about the death until it is registered, there is a delay between the date the death occurred and when the death is added to the annual ONS mortality data set. The ONS found that less than 41% of deaths going to inquest were registered within 3 months, though 96% were registered within 1 year.28 Thus, precise information on the annual incidence of suicide may be delayed by up to 2 years. Information collected at death registration is recorded on the Registration Online system by registrars. Most of the information is normally supplied by the informant (usually a close relative of the deceased), while the cause of death (COD) is usually obtained from the Medical Certificate of Cause of Death (MCCD), completed by a medical practitioner when the death is certified using ICD-10 coding, or the coroner if there is an inquest.19 Notably, a death is not officially registered within the Annual District Deaths Extract (ADDE) until the COD has been finalised, and thus the year of death and the year of registration may not concur. The primary data set used to construct SID-Cymru is the ADDE from the ONS. The ADDE is inclusive of Welsh residents who died outside of Wales, and holds information about COD derived from death certificates on all deaths in Wales.

Definition of suicide for cases

The true number of suicides is difficult to determine because a coroner's conclusion of suicide must be ‘beyond a reasonable doubt’, that is, that the death was intentionally self-inflicted and in some areas coroners have increasingly (since 2001) reported narrative conclusions rather than reporting it as suicide.29 30 Previously, when insufficient information was recorded by the coroner, ONS coders would record the death as an accident, which inevitably led to some suicides being classified as accidents or misadventure. The ONS has recently issued guidance on this issue following a coding practice review.31 Current ONS practice includes deaths where intention is ‘undetermined whether accidentally or purposefully inflicted’; thus deaths where there may be no intention to take life, such as in relation to injury or poisoning, are included in suicide figures by ONS. Currently, there is no access to coroners’ narrative verdicts within the SAIL Databank as a possible method for review of case inclusion. There is evidence to suggest that a high proportion of deaths from poisoning and hanging that receive accidental verdicts are found, when subjected to clinical review, to be suicides.32 Such possible deaths through suicide will be included in SID-Cymru as an opportunity for further separate and combined analysis; thus the additional ICD-10 codes relating to ‘accidental poisoning with prescribed drugs’ (X40–X41, X43–X49) and ‘accidental hanging’ (W75–W76) may be used along with ‘sequelae of external causes of morbidity and mortality’ (Y87, Y87.2, Y89, Y89.9).19 Thus with SID-Cymru we aim to establish a resource for studying factors associated with all probable, as well as possible, deaths through suicide, by including accidental hanging/strangulation and accidental poisoning, excluding narcotics and psychodysleptics (ie, possible suicides), along with the ONS traditional method of defining suicides, which includes suicides and deaths of undetermined intent (probable suicides).2

Identification of cases and controls

SID-Cymru cases encompass suicides (‘intentional self-harm’ (ICD-10: X60–X84)) and probable deaths through suicide (‘undetermined intent’ (ICD-10: Y10–Y34, excl.Y33.9)) recorded from the MCCD and presented within ADDE as the underlying COD. Those coded Y33.9/U50.9 (pending verdicts) are excluded, since a large proportion of these are subsequently found to be homicides. Probable suicide defined above can be supplemented with possible deaths through suicide if required. Cases of probable suicide will be identified and extracted by use of the ICD-10 codes19 defined above and depicted in table 1.
Table 1

ICD-10 codes used to identify and extract cases of death through probable suicide for SID-Cymru

Short nameDescriptionICD-10 codes
PoisoningPoisoning by and exposure to one or more types of poisonsX60–X69, Y10–Y19
Hanging and suffocationHanging, strangulation and suffocationX70, Y20
DrowningDrowning and submersionX71, Y21
GunsFirearm dischargeX72–X74, Y22–Y24
Sharp objectSharp objectX78, Y28
Jumping from a high placeJumping from a high placeX80, Y30
Jumping or lying before moving objectJumping or lying before moving objectX81, Y31
Explosives and fireExplosive material, smoke, fire, flames and hot objectsX75–X77, Y25–Y27
Other or unspecified eventsIntentional self-harm by other/un-specified means; other/un-specified events of undetermined intentX83–X84, Y33–Y34 (excl.Y33.9)
Crash by motor vehicleCrashing of motor vehicle/intentional and undetermined intentX82, Y32
Blunt objectBlunt objectX79, Y29

ICD-10, International Classification of Disease, Tenth Revision; SID, Suicide Information Database.

ICD-10 codes used to identify and extract cases of death through probable suicide for SID-Cymru ICD-10, International Classification of Disease, Tenth Revision; SID, Suicide Information Database. ONS figures include only those over 15 years of age, due to the possibility that deaths in younger children coded as undetermined events may be caused by unverifiable accidents, neglect or abuse.33 SID-Cymru will allow for the analysis of suicides and probable suicides for the 10–14-year age band. Official ONS mortality statistics are produced based on the number of deaths registered in a particular calendar year, rather than the number of deaths that occurred in that year. This means their figures include some deaths that occurred in years prior to the reference year (approximately 4%). As SID-Cymru will link and review data in the period leading up to death it is important to ensure the match/end date reflects the correct time period (specific to each individual case), that is,  DOD not date of registration, to afford an accurate perspective on utilisation of resources and help-seeking behaviours. Consequently, the actual DOD (ADOD) will be used in the matching criteria to establish a data review ‘end date’ for controls, rather than the registered DOD (RDOD) referred to in ONS reports. Mortality data within the SAIL Databank is only available from 2003, thus the earliest case inclusion relates to ADOD's from 1 January 2003. To minimise the underestimation of cases identified (ie, due to delays in COD confirmation and registration of DOD) the case inclusion for SID-Cymru includes cases aged 10 years and over at ADOD, where the ADOD took place between 01 January 2003 and 31 December 2011. Table 2 presents the number of registered deaths through suicide per year and actual deaths per year between 2003 and 2011 as reported by the ONS and as identified for SID-Cymru within the SAIL Databank.
Table 2

Probable suicide* deaths for Wales 2003–2011 identified within the SAIL Databank for SID-Cymru

Count by Year†200320042005200620072008200920102011Total
Probable suicidesADOD within SID‡3613032872782792822722923042664
Probable suicidesRDOD within SID2743302703002882662572873402612
ONS Probable suicides§RDOD3323302693002892662582883412673

*Probable suicides=ICD-10 codes for intentional (X60–X84), undetermined (Y10–Y34 excl.Y33.9) self-harm.

†Values are number of individuals unless otherwise indicated.

‡Cases identified for SID-Cymru include those aged 10 years and over.

§Cases reported by the ONS include those aged 15 years and over.

ADOD, actual date of death; ICD-10, International Classification of Disease, Tenth Revision; ONS, Office of National Statistics;

RDOD, registered date of death; SAIL, Secure Anonymised Information Linkage; SID, Suicide Information Database.

Probable suicide* deaths for Wales 2003–2011 identified within the SAIL Databank for SID-Cymru *Probable suicides=ICD-10 codes for intentional (X60–X84), undetermined (Y10–Y34 excl.Y33.9) self-harm. †Values are number of individuals unless otherwise indicated. ‡Cases identified for SID-Cymru include those aged 10 years and over. §Cases reported by the ONS include those aged 15 years and over. ADOD, actual date of death; ICD-10, International Classification of Disease, Tenth Revision; ONS, Office of National Statistics; RDOD, registered date of death; SAIL, Secure Anonymised Information Linkage; SID, Suicide Information Database. Matched Controls will be identified within the WDS as live individuals matched on age (to the nearest year) and gender who were registered within the WDS for at least 1 year prior to matched case's ADOD. The controls will be required to be alive at the time of the matched case's ADOD (ie, the match/end date). The use of live controls limits the introduction of bias relating to deaths, particularly in the younger age groups, of those undertaking risky behaviours resulting in premature death (eg, substance use, accidents) that may be associated with unrecognised suicidal behaviours or known risk factors. To add to the power of the study we aim to identify at least five controls to every one case.34

Routine data sources

For SID-Cymru the data collected on identified cases and controls, via ADDE and the WDS, respectively, will be linked to other routinely collected data sets, retrospectively allowing a review of each individual's pathway through the various services. Linkage with, for example, GP system data provides varying information about patients going back several years, including previous diagnosis, presenting symptoms and previous medications prescribed. This data set can be used to review contacts with the GP and, consequently, infer the development/diagnosis of any new medical conditions including depression and self-harm prior to suicide. Linkage with inpatient data will allow a review of hospital contacts and Emergency Department Data Sets will give information on crisis contacts. This will provide comprehensive insights into help seeking behaviours and management across settings. Data sets currently accessible via the SAIL Databank, which will be linked to SID-Cymru, are presented in table 3. In the future there are several other data sets, currently under consideration for inclusion, within the SAIL Databank to which SID-Cymru could link; including Department of Work and Pensions' (DWP) employment and incapacity status, Looked After Children, Fostering, Substance Misuse Services, Sexually Transmitted Infections and Police Data.
Table 3

Data sets available within the Secure Anonymised Information Linkage (SAIL) Databank for linkage with Suicide Information Database (SID)-Cymru cases and controls

Data setData descriptionData providerData typeGeographical coverageAvailable from
Annual District Death ExtractRegister of all deaths relating to Welsh residents, including those who died out of WalesNHS Wales’ Informatics Service (NWIS)/ Health Solutions Wales (HSW) on behalf of Office of National Statistics (ONS)Registry dataWales2003
Welsh Demographic ServiceAdministrative information about individuals in Wales who use National Health Service (NHS) services; such as address and practice registration history. It replaced the NHS Wales Administrative Register (NHS AR) in 2009NWIS/HSWAdministrative (mandatory) data returnWales1990
Area-Based Deprivation ScoresLower Super Output Area—Townsend Deprivation Index and Welsh Index of Multiple Deprivation ScoresNWIS/ HSWAdministrative dataWales2001/2005
Education attainmentEducational attainment at key stages (pre 16 years old). Data collated from school census, the national pupil survey and educational attainment databases by the Welsh GovernmentDepartment for Children, Education, Lifelong Learning and SkillsAdministrative/ survey dataWales2005
General Practice (GP) data setEach GP practice uses a clinical information system to maintain an electronic health record for each of its patients; capturing the signs, symptoms, test results, diagnoses, prescribed treatment, referrals for specialist treatment and social aspects relating to the patient’s home environmentWelsh GPs who have signed up to the SAIL DatabankClinical system dataWales2000
Patient Episode Database for WalesNHS Wales—hospital admissions (inpatients and day cases) data set comprising of attendance and clinical information for all hospital admissions: includes diagnoses and operations performedNWIS/HSWAdministrative (mandatory) data returnWales1997
Outpatient DatasetAttendance information for all NHS Wales hospital outpatient appointmentsNWIS/HSWAdministrative (mandatory) data returnWales2004
Emergency Department Data SetAdministrative and clinical information for all NHS Wales accident and emergency department attendances. Includes the All Wales Injury Surveillance Systems (AWISS) data setNWIS/HSWAdministrative (mandatory) data returnWales2009
Data sets available within the Secure Anonymised Information Linkage (SAIL) Databank for linkage with Suicide Information Database (SID)-Cymru cases and controls

Measurements

Data variables/characteristics

Data to be included in SID-Cymru will be extracted from the SAIL Databank and will include basic demographics; educational data; ADOD and RDOD; numbers and percentages for deprivation; proportions known to different healthcare settings in the period prior to death; and inclusive medical history, that is, primary care contact and diagnosis (by Read Codes), information about hospital/psychiatric admission and diagnosis (by ICD-10 codes), and nature of service contact, for example, for self-harm, substance misuse. Therefore, the routinely collected data held by the NHS and other public bodies supplying the existing SAIL Databank will maximise the narrative of a death through suicide while being less resource intensive than psychological autopsies. The initial variables to be extracted and linked across data sets are described in table 4.
Table 4

Characteristics to be identified and collected through data linkage for SID-Cymru cases and controls

DataCharacteristics
DemographicsSex
Date of birth
Marital status*
Employment*
Education*
MortalityDOD
Age at DOD (in years)
Registered date of death
Cause of death (ICD-10 code)
DeprivationLSOA
WIMD
Townsend
Rural–urban indicators
Medical historyGP register*
GP diagnosis (Read Code)*
GP events*
Hospital attendance
Hospital diagnosis
Hospital events
Outpatient attendance
Outpatient diagnosis*
Outpatient events
ED attendance*
ED diagnosis*
ED events*
Psychiatric admission*

*Where data are available; there may be limitations to the number of cases with this information.

DOD, date of death; ED, emergency department; GP, general practice; ICD-10, International Classification of Disease, Tenth Revision; LSOA, lower super output area; SID, Suicide Information Database; WIMD, Welsh Index of Multiple Deprivation.

Characteristics to be identified and collected through data linkage for SID-Cymru cases and controls *Where data are available; there may be limitations to the number of cases with this information. DOD, date of death; ED, emergency department; GP, general practice; ICD-10, International Classification of Disease, Tenth Revision; LSOA, lower super output area; SID, Suicide Information Database; WIMD, Welsh Index of Multiple Deprivation.

Planned analyses

The primary objective is to establish SID-Cymru as a resource for future analysis. It is important to maximise the utility of the resource, and some general principles of analysis have been determined. Identification and description of cases: number of deaths registered with ONS and available within the SAIL Databank, with relevant ICD-10 codes defined as suicides, between 2003 and 2011. Identification and description of matched controls. Basic demographics. Table of delay (days) in registering suicides and undetermined deaths. Proportions known to different healthcare settings: number and percentages, with main diagnosis, that had a general hospital admission; emergency department contact for self-harm and other indications; psychiatric admission and primary care contact in the year prior to probable suicide. Numbers and percentages for deprivation, employment status, educational achievement and medical history (eg, chronic pain, terminal illness, medication, previous self-harm and substance misuse) will also be sought. Number of cases with missing data across data sets for variables of interest will be noted.

Area-based measures of socioeconomic deprivation

Deprivation will be measured at lower super output area (LSOA) level using the Welsh Index of Multiple Deprivation35 (WIMD) and Townsend Index Score.36 All suicides and matched controls will be assigned to a LSOA. There are 1909 LSOAs in Wales with an average population of 1500 people (range: 1000–3000).37 Linkage to WIMD and Townsend Index information is available in the SAIL Databank. These will be ranked for deprivation, divided into quintiles and standardised rates calculated.

ORs for the described exposures in the case–control study

A case–control study utilising SID-Cymru will be population based and so the relative risk of suicide will be estimated by conditional logistic regression model with SPSS (V.20). Crude ORs will be adjusted for general practice and/or LSOA by matching cases and controls. Unadjusted estimates, confounder-adjusted estimates and their precision (eg, 95% CI) will be produced. Interactions between variables will be assessed with the log likelihood ratio test based on results from the adjusted analysis. The population-attributable risk will be calculated38 on the basis of adjusted relative risks from the full analysis and the distribution of exposures in the cases. We will also report information on the completeness of linkage with each data set.

Ethics and dissemination

Ethics

A large amount of preliminary work on anonymisation methodologies was undertaken to create the SAIL Databank system,17 18 and the SAIL Databank has the required ethical permissions and processes in place to analyse anonymised data. It operates within a robust series of guidelines in line with the Caldicott principles and the National Information Governance Board for Health and Social Care.18 In compliance with the Information Governance Review Panel rulings and the Data Protection Act 1998,39 individual-level data and personal identifier linkage codes will not be removed from the SAIL Databank and all analyses will be carried out within the SAIL Databank gateway at Swansea University, a secure access point to data within the SAIL Databank. The key points of the MRC/Wellcome Trust data sharing policy will be followed.40 41

Dissemination

This paper describes the protocol for the development of SID-Cymru, and the research opportunities available from an electronic case–control study of suicides within a whole population. SID-Cymru will have the ability to link suicide cases anonymously to primary and secondary health information along with other social care data, allowing us to review each case's journey through these data sets. The establishment of SID-Cymru and exploration of the linkage methodologies will improve our understanding of those who complete suicide (particularly those not known to mental health services) and will be used to inform service planning and policy decision making and implementation. It will help identify key opportunities and settings for prevention of this tragic event. By so doing, SID-Cymru will join other international databases of suicide research and provide a platform for further investigation and data linkages. In order for SID-Cymru to become a functional resource it is important to be aware of the limits of health data available; though widely used in research, and offering a broad range of information about treatment and associated conditions, there are issues relating to determining the quality of patient records, the completeness of data available and any conclusions that may be drawn from them, perhaps particularly concerning primary care records.42 That is, working with routinely collected data presented in its ‘raw’ format, where duplicates, missing and erroneous entries are common occurrences, requires a certain level of database analysis skills. While some such administrative-based/system-based recording issues are easy to identify and account for in individual data sets, it is not always apparent what is correct and what is erroneous at the combined level. Indeed, this problem is confounded when linkage of data reveals conflicting information causing routine data to appear inaccessible and attempts at linkage discouraged. Thus, a secondary aim for SID-Cymru is to share the skills developed as part of establishing a suicide database, which can aid colleagues who may lack such analytical expertise and foster greater multidisciplinary collaborations and advance suicide research. The UK has a strong presence in the form of a wide range of publications and expertise relating to suicide research. Successful and dedicated Suicide Research Centres exist in Bristol, Manchester and Oxford,43–45 and Scotland recently started work on a ‘ScotSID’.46 These centres of excellence report broadly about suicide, though for logistical reasons, often, a regional focus is retained relating to project funding, analytical and interventional work; for that reason the establishment of SID in Wales will build on and enhance existing UK suicide resources and infrastructure since the level of linkage available within the SAIL Databank is unique in this field. Unique opportunities within the SAIL Databank include linkage across primary, secondary and emergency department data, and with education data. Findings will be disseminated through publications in peer-reviewed journals and presentations at local, national and international conferences. Communication and consultation with key stakeholders from health and social care (eg, primary care, mental health, Royal Colleges), government and other policy makers, as well as the third sector, will occur. Dissemination will be facilitated by the wider roles and responsibilities in suicide prevention, nationally and internationally, of members of the research team.

Implications and significance

Valuable opportunities exist for a wide range of epidemiological and clinical studies on suicide in Wales and SID-Cymru has the potential to become an important resource in facilitating such research, which will be of relevance internationally. In addition to the records that have already been included for linkage with SID-Cymru it is expected that, over time, relevant information from other data sources (eg, the DWP) will be linked to SID-Cymru to provide a wider range of information on issues such as individuals’ circumstances, the nature of their deaths and their contact with extended services. Additionally, linkage can be made with non-routinely collected data sets, such as those held by NCISH. Specific hypotheses that will be explored include: recency of primary care, hospital and emergency department contacts including attendance for self-harm, primary care diagnosis of depression, levels of treatment with antidepressants and trends in such treatment over time, rural and urban geography, contacts for the elderly and levels of physical illness. Findings of current and projected public health importance will be assessed and presented to support policy makers, commissioners and providers of health and social care in Wales. Non-identifiable information from this project will be made available to researchers in Wales, the UK and international collaborators. The initial project focus will be on identification of cases and controls, data linkage opportunities and methodological issues relating to the establishment of SID-Cymru and routine data linkage (phase 1), before starting data extraction and analysis (phase 2). The proposed data collation and linkage of primary, secondary and emergency department health information together with educational data are currently unique in the UK. Thus it is possible to develop a central repository for information relating to suicide in a whole population, which will be of relevance internationally. This paper describes the design and development of a Suicide Information Database in its infancy.
  27 in total

1.  Compared to what? Finding controls for case-control studies.

Authors:  David A Grimes; Kenneth F Schulz
Journal:  Lancet       Date:  2005 Apr 16-22       Impact factor: 79.321

2.  Suicide rates in psychiatric in-patients: an application of record linkage to mental health research.

Authors:  D M Lawrence; C D Holman; A V Jablensky; S A Fuller
Journal:  Aust N Z J Public Health       Date:  1999-10       Impact factor: 2.939

3.  Adults' use of health services in the year before death by suicide in Alberta.

Authors:  Kenneth B Morrison; Lory Laing
Journal:  Health Rep       Date:  2011-09       Impact factor: 4.796

4.  Narrative verdicts and their impact on mortality statistics in England and Wales.

Authors:  Chris Hill; Lois Cook
Journal:  Health Stat Q       Date:  2011

5.  School performance and risk of suicide in early adulthood: follow-up of two national cohorts of Swedish schoolchildren.

Authors:  D Gunnell; S Löfving; J-E Gustafsson; P Allebeck
Journal:  J Affect Disord       Date:  2011-02-05       Impact factor: 4.839

6.  Suicide risk in relation to socioeconomic, demographic, psychiatric, and familial factors: a national register-based study of all suicides in Denmark, 1981-1997.

Authors:  Ping Qin; Esben Agerbo; Preben Bo Mortensen
Journal:  Am J Psychiatry       Date:  2003-04       Impact factor: 18.112

7.  Incidence and risk factors for suicide attempts in a general population of young people: a Danish register-based study.

Authors:  Erik Christiansen; Kim Juul Larsen; Esben Agerbo; Niels Bilenberg; Elsebeth Stenager
Journal:  Aust N Z J Psychiatry       Date:  2012-10-11       Impact factor: 5.744

8.  Cohort profile: the Caerphilly health and social needs electronic cohort study (E-CATALyST).

Authors:  David L Fone; Frank Dunstan; James White; Mark Kelly; Daniel Farewell; Gareth John; Ronan A Lyons; Keith Lloyd
Journal:  Int J Epidemiol       Date:  2012-11-05       Impact factor: 7.196

9.  The SAIL Databank: building a national architecture for e-health research and evaluation.

Authors:  David V Ford; Kerina H Jones; Jean-Philippe Verplancke; Ronan A Lyons; Gareth John; Ginevra Brown; Caroline J Brooks; Simon Thompson; Owen Bodger; Tony Couch; Ken Leake
Journal:  BMC Health Serv Res       Date:  2009-09-04       Impact factor: 2.655

10.  Time trends in coroners' use of different verdicts for possible suicides and their impact on officially reported incidence of suicide in England: 1990-2005.

Authors:  D Gunnell; O Bennewith; S Simkin; J Cooper; E Klineberg; C Rodway; L Sutton; S Steeg; C Wells; K Hawton; N Kapur
Journal:  Psychol Med       Date:  2012-11-01       Impact factor: 7.723

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  14 in total

1.  PHAC and a national suicide prevention strategy.

Authors:  Alain Lesage; Gustavo Turecki; Sylvanne Daniels
Journal:  CMAJ       Date:  2017-01-30       Impact factor: 8.262

2.  Individual, programmatic and systemic indicators of the quality of mental health care using a large health administrative database: an avenue for preventing suicide mortality.

Authors:  Lise Thibodeau; Elham Rahme; James Lachaud; Éric Pelletier; Louis Rochette; Ann John; Anne Reneflot; Keith Lloyd; Alain Lesage
Journal:  Health Promot Chronic Dis Prev Can       Date:  2018 Jul/Aug       Impact factor: 3.240

3.  Comparison of Vital Statistics Definitions of Suicide against a Coroner Reference Standard: A Population-Based Linkage Study.

Authors:  Evgenia Gatov; Paul Kurdyak; Mark Sinyor; Laura Holder; Ayal Schaffer
Journal:  Can J Psychiatry       Date:  2017-10-23       Impact factor: 4.356

Review 4.  Information for mental health systems: an instrument for policy-making and system service quality.

Authors:  A Lora; A Lesage; S Pathare; I Levav
Journal:  Epidemiol Psychiatr Sci       Date:  2016-10-26       Impact factor: 6.892

5.  Population-based analysis of health care contacts among suicide decedents: identifying opportunities for more targeted suicide prevention strategies.

Authors:  Ayal Schaffer; Mark Sinyor; Paul Kurdyak; Simone Vigod; Jitender Sareen; Catherine Reis; Diane Green; James Bolton; Anne Rhodes; Sophie Grigoriadis; John Cairney; Amy Cheung
Journal:  World Psychiatry       Date:  2016-06       Impact factor: 49.548

6.  Risk of suicide following an alcohol-related emergency hospital admission: An electronic cohort study of 2.8 million people.

Authors:  Bethan Bowden; Ann John; Laszlo Trefan; Jennifer Morgan; Daniel Farewell; David Fone
Journal:  PLoS One       Date:  2018-04-27       Impact factor: 3.240

7.  Risk of Unnatural Mortality in People With Epilepsy.

Authors:  Hayley C Gorton; Roger T Webb; Matthew J Carr; Marcos DelPozo-Banos; Ann John; Darren M Ashcroft
Journal:  JAMA Neurol       Date:  2018-08-01       Impact factor: 18.302

8.  Case-finding for common mental disorders of anxiety and depression in primary care: an external validation of routinely collected data.

Authors:  Ann John; Joanne McGregor; David Fone; Frank Dunstan; Rosie Cornish; Ronan A Lyons; Keith R Lloyd
Journal:  BMC Med Inform Decis Mak       Date:  2016-03-15       Impact factor: 2.796

9.  Integrating electronic healthcare records of armed forces personnel: Developing a framework for evaluating health outcomes in England, Scotland and Wales.

Authors:  Daniel Leightley; Zoe Chui; Margaret Jones; Sabine Landau; Paul McCrone; Richard D Hayes; Simon Wessely; Nicola T Fear; Laura Goodwin
Journal:  Int J Med Inform       Date:  2018-02-21       Impact factor: 4.046

10.  Using Neural Networks with Routine Health Records to Identify Suicide Risk: Feasibility Study.

Authors:  Marcos DelPozo-Banos; Ann John; Nicolai Petkov; Damon Mark Berridge; Kate Southern; Keith LLoyd; Caroline Jones; Sarah Spencer; Carlos Manuel Travieso
Journal:  JMIR Ment Health       Date:  2018-06-22
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