NHS Digital Data Release Register - reformatted

Derbyshire Healthcare NHS Foundation Trust projects

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

MR1142 - Self Harm Monitoring Project - Mortality Following Self-Harm — DARS-NIC-147907-MLK7R

Type of data: information not disclosed for TRE projects

Opt outs honoured: Yes - patient objections upheld, N, Anonymised - ICO Code Compliant, Identifiable, Yes (Section 251, Section 251 NHS Act 2006)

Legal basis: Section 251 approval is in place for the flow of identifiable data, Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(1) and s261(2)(b)(ii), Health and Social Care Act 2012 – s261(7), Health and Social Care Act 2012 – s261(7); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 - s261 - 'Other dissemination of information', Health and Social Care Act 2012 – s261(2)(b)(ii), Health and Social Care Act 2012 - s261(5)(d); National Health Service Act 2006 - s251 - 'Control of patient information'., Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (NHS Trust)

Sensitive: Sensitive, and Non Sensitive, and Non-Sensitive

When:DSA runs 2018-08-01 — 2021-07-31 2016.04 — 2023.08.

Access method: Ongoing, One-Off

Data-controller type: DERBYSHIRE HEALTHCARE NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. MRIS - Cause of Death Report
  2. MRIS - Cohort Event Notification Report
  3. MRIS - Flagging Current Status Report
  4. MRIS - Members and Postings Report
  5. MRIS - Scottish NHS / Registration
  6. Civil Registration - Deaths
  7. Demographics
  8. MRIS - Bespoke
  9. Civil Registrations of Death

Objectives:

Derbyshire Healthcare Foundation NHS Trust requires demographic and mortality data for use in the Derby Monitoring system of Self-harm and the Multicentre Study of Self-Harm in England.

In England and Wales there are at least 200,000 general hospital presentations for self-harm (intentional self-poisoning or self-injury) per year. Self-harm occurs in relation to a wide range of personal problems, emotional turmoil and psychiatric disorders. It carries a significant risk of premature death, particularly suicide and has major impacts on family members and friends. It also places pressure on busy emergency departments (EDs), wards and clinicians, as well as having major financial costs for the NHS.

Since 1989 the South Derbyshire Liaison team (formerly named the deliberate self-harm team and then the Mental Health Liaison Team) of Derbyshire Healthcare NHS Foundation Trust based at the Royal Derby Hospital (formerly the Derby Royal Infirmary and Derby City General) have monitored self-harm attendances (the team’s patient population) to the Emergency Department as part of everyday clinical practice.

The aim of the Derby monitoring system is to:
• Monitor local self-harm and suicide numbers
• Examine the association between self-harm, suicide and other causes of premature death
• Help inform service planning, policy development, local service provision, deliver training to clinical staff and local suicide prevention strategies.

In order to meet such aims, each person attending the Emergency Department at the Royal Derby Hospital due to self-harm is flagged with NHS Digital for mortality follow up.

The Derby monitoring system of self-harm is a long running project. Prior to this Agreement, all people attending Derby’s Emergency Department with self-harm from the year 2000 to 2013 had been flagged with NHS Digital for mortality follow up.

The Derby Monitoring system of self-harm is run solely by Derbyshire Healthcare NHS Foundation Trust for service evaluation and development purposes.

The aim of the Multicentre Study programme of research is to conduct a series of related studies on the epidemiology, causes, clinical management, outcome and prevention of self-harm. Through a multicentre collaboration the research provides representative and reliable data on self-harm in England. It contributes to the National Suicide Prevention Strategy for England (2002, 2012) and prevention and service initiative, including NICE guidance on self-harm (National Collaborating Centre for Mental Health 2004, 2011).

Each collaborator independently undertakes follow-up of individuals who present to hospital with self-harm in their respective areas. This involves receiving follow up data from NHS Digital under separate Data Sharing Agreements. These are Agreements ref: DARS-NIC-147916-DPQ3Q for University of Manchester and ref: DARS-NIC-147957-4444C for the University of Oxford. For the purpose of the Multicentre Study of Self-harm in England, pseudonymised copies of their respective datasets are transferred to the University of Oxford. Amalgamated copies of the pseudonymised data for all three locations are then transferred to each collaborating organisation. The organisations then have autonomy to independently determine what analyses will be undertaken using their copies of the data and for what purposes, in support of the aims of the programme above.

For avoidance of doubt, notwithstanding mention of hospitals in Leeds and a research group in Leeds being mentioned as part of the multicentre collaborative project in a protocol document produced in 2008, no hospitals or research groups in Leeds including from the University of Leeds are part of this project nor will they either control or process any data under this Agreement.

Yielded Benefits:

Derbyshire Healthcare’s Suicide Prevention Strategy and that of Derbyshire Suicide Prevention Partnership Forum includes a target to support high risk groups - particularly those who have self-harmed. Commissioning of a 24/7 Liaison Psychiatry service at the Royal Derby Hospital. Data contributed to the Multicentre Study of Self-harm. Conducted studies which are relevant to clinical services and policy on suicide prevention. One example is how through linking episodes of self-harm with suicide as an outcome, researchers are able to identify clinically important risk factors for suicide following an episode of self-harm (non-fatal self-harm being the most important risk factor for suicide). For example, in children and adolescents is has been shown that risk of future suicide is strongest in boys, and in those with multiple episodes of previous self-harm and where certain specific methods of self-harm have been used. In adults it has been shown that a particularly high risk of subsequent suicide in people who have a history of multiple episodes of self-harm. Another example concerns the relationship between clinical management and subsequent suicide. Thus, the researchers have been able to investigate whether receipt of a psycho-social assessment while a person is in hospital following self-harm decreases the risk of future suicide. A further example has been to show that a measure of suicidal intent (that is of an individual’s apparent wish to die that is associated with an episode of self-harm) is related to short-term risk of future suicide, but not longer-term risk. This is relevant to clinical practice because suicidal intent is often measured by clinicians using a specific scale (the one used in this research).

Expected Benefits:

Every year there are about 200,000 presentations to general hospitals following self-harm in England and Wales. Self-harm is the strongest risk factor for completed suicide and is associated with non-suicidal premature death. It is also associated with considerable healthcare costs. Self-harm has been highlighted as a priority area for research in the National Suicide Prevention Strategy for England and especially in the 2017 update of the strategy.

This study has significant, wide reaching implications for local policy and practices. Knowledge generated feeds into the local suicide prevention strategy and feeds into local training packages for clinicians and managers working with people and designing services for people who self-harm. The knowledge generated has also contributed to business cases for local services e.g. need for a 24/7 Liaison Psychiatry service at the Royal Derby Hospital.

Through the Multicentre Study of self-harm findings are continually published around self-harm rates in England and the associated risk of premature death (including from suicide) which informs Department of Health policies e.g. the Suicide Prevention Strategy for England (2002, 2012, 2017) and NICE guidelines for the management of self-harm (2004, 2011). All papers published to date can be found here: www.cebmh.warne.ox.ac.uk/csr/mcm/publications/index.html

Outputs:

The Derby monitoring system of self-harm and the Multicentre Study of Self-harm in England (including data from the monitoring systems for self-harm at University of Manchester and University of Oxford) are ongoing projects. Outputs from these projects are multiple. The aims of this study are to identify risk factors for specific causes of death (including suicide) in persons who present to hospital after self-harm and to investigate how specific aspects of in-hospital care relate to mortality following self-harm. Specific outputs planned for the next 18 months include:

* Identifying overall risk factors for suicide and other specific causes of death following self-harm.
* Identifying risk factors for suicide and non-suicidal premature mortality in children and adolescents
* Specific method of self-harm as a risk for suicide and premature death
* Epidemiology of paracetamol poisoning and risk of death by suicide.

* The findings from these studies will be published in peer-reviewed journals aimed at clinicians and researchers.
* Periodic reports for the Department of Health (the study funding body) and the National Suicide Prevention Strategy for England Advisory Group to communicate progress and key findings will be produced.
* Findings are published on the website of the Multicentre Study of Self Harm in England where information is summarized in layman's terms.

Other outputs include:
* Presentations of research findings at scientific meetings aimed at clinicians, researchers and stakeholders
* Presentations at meetings with clinical staff involved in delivering care for individuals who self-harm
* Meetings with policy making and regulatory bodies such as the National Institute for Health and Care Excellence (NICE), Medicines and Healthcare products Regulatory Agency (MHRA), National Suicide Prevention Strategy working group

In all the above, data will be presented in an aggregate format and individuals cannot be identified.

Summaries of projects undertaken are accessible on the Derbyshire Health NHS Foundation Trust website: http://www.derbyshirehealthcareft.nhs.uk/get-involved/research-and-development-home/sh-and-sp/research/

Details of publications by the Multicentre Study are published on the Multicentre Study website: http://cebmh.warne.ox.ac.uk/csr/mcm/index.html

Processing:

For the purpose of the Derby Monitoring system of Self-harm, Derbyshire Healthcare Foundation NHS Trust collects information about every attendance to the Royal Derby Hospital’s Emergency Department which is due to self-harm. Identifiable data (full name, date of birth, gender, full last known address) for all patients captured by the Derby Monitoring System of Self-harm is downloaded from Derbyshire Healthcare’s electronic patient record system on an annual basis.

The data is saved in an encrypted file on a secure network drive of Derbyshire Healthcare NHS Foundation Trust. The network drive and the password for the file is only accessible to members of the Derby monitoring team.

Data files containing the following variables are securely transferred to NHS Digital for mortality flagging:
- NHS Number
- Name
- Date of Birth
- Gender
- Last Known Address

NHS Digital provides annual reports on the vital status (including details of death where applicable) on all individuals flagged in the cohort. New individuals are added to the cohort annually.

Derbyshire Healthcare NHS Foundation Trust receives the mortality data received back from NHS Digital and saves it on a secure Trust network drive in an encrypted format. After data accuracy checks, all identifiable data is removed (a numerical study identifier for each patient is used). The mortality data is then linked with the rest of the Derby self-harm monitoring system data using the unique study identifier for each patient and used for local monitoring and service evaluation purposes.

For the purpose of the Multicentre Study of Self-Harm in England, Derbyshire Healthcare NHS Foundation Trust securely transfers de-identified data from the Derby Monitoring System to the University of Oxford.

NHS Digital will not send any data relating to the Derby Monitoring System directly to the University of Oxford.

NHS Digital variables securely transferred by Derbyshire Healthcare NHS Foundation Trust to the study coordinator in Oxford are:
- Date of death
- Cause of death text (A to E)
- Date of registration
- ICD10 underlying cause
- ICD10 multiple cause codes (1 to 15)
- Event type

On receipt of the de-identified data, the University of Oxford becomes the data controller for that data and is permitted to process the data in accordance with the terms of its separate Data Sharing Agreement with NHS Digital (reference: DARS-NIC-147957-4444C). At the University of Oxford, the data is amalgamated with the equivalent data on the self-harm cohorts managed by the University of Manchester and the University of Oxford respectively.

A copy of the combined pseudonymised dataset is transferred from University of Oxford to Derbyshire Healthcare NHS Foundation Trust. This is stored separately from the Derby self-harm cohort and, while the combined cohort contains a copy of the Derby self-harm cohort, the two datasets are not directly linked. While the Multicentre Study database contains some information on individuals included on the Derby monitoring system of self-harm database, the Derby only data is more detailed and extensive as required for undertaking local evaluation activities. On receipt of the copy of the combined dataset, Derbyshire Healthcare NHS Foundation Trust becomes the data controller for that copy.

No patient-identifiable data are shared between the three collaborating centres.

Data from the Derby Monitoring study of Self-harm and the Multicentre Study of Self-Harm in England are analysed (for local and national purposes respectively) to identify risk factors for specific causes of death including suicide and other causes in persons who present to hospital after self-harm and to investigate how specific aspects of in-hospital care, may relate to subsequent mortality.


All files are saved on a Derbyshire Healthcare NHS network drive which can only be accessed by a small number of individuals belonging to the Derby monitoring system team - all of whom are employees of Derbyshire Healthcare NHS Foundation Trust and are named members on the Multicentre study of self-harm NHS REC approvals.

Arden and Gem Commissioning Support Unit provide IT services to Derbyshire Healthcare which includes backing up all data saved on the NHS Trust Network Drives. All files saved on the network drives are also encrypted and only the monitoring team have access to the passwords.

All organisations party to this Agreement must comply with the Data Sharing Framework Contract requirements, including those regarding the use (and purposes of that use) by “Personnel” (as defined within the Data Sharing Framework Contract - i.e. employees, agents and contractors of the Data Recipient who may have access to that data).