NHS Digital Data Release Register - reformatted

Nottinghamshire Healthcare NHS Foundation Trust

Project 1 — DARS-NIC-69751-C0M8P

Opt outs honoured: Y

Sensitive: Sensitive, and Non Sensitive

When: 2018/06 — 2018/09.

Repeats: One-Off

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

Categories: Identifiable

Datasets:

  • Civil Registration - Deaths
  • Hospital Episode Statistics Admitted Patient Care

Expected Benefits:

Very little is known about the long-term outcomes of patients discharged from medium secure care and the quality of life they experience. Medium Secure Units are low-volume high-cost services consuming one percent of the entire NHS budget (Walker et al., 2012). On average, patients residing in medium secure care cost approximately £200,000 per year (Walker et al., 2012). The patients detained in MSUs are believed to be at risk of causing serious physical or psychological harm to others. Some patients also pose a serious risk to their own health and wellbeing. Given the societal costs and potential impact of patient outcomes, the treatment, care and management of Mentally Disordered Offenders discharged from medium secure care is of public concern and professional interest. The findings from the previous project contributed to the knowledge base extensively, resulting in several papers published in peer-reviewed journals and highlighted that patients discharged from medium security experienced high mortality rates, particularly from suicide. Few studies examining the outcomes of patients discharged from medium secure care had reported mortality rates. Therefore the mortality rates of patients discharged from medium security is under-researched in comparison to other outcomes such as reconviction. Whilst reconviction is an important outcome, data requested from NHS Digital will assist in providing important clinical information which is vital in understanding a vulnerable and complex population such as this. Over the past 15 years the Government has launched numerous initiatives to combat high suicide rates and to widen the knowledge base. In October 2011, NHS Digital began to publish mortality statistics at a Trust level for the NHS across England, including Mental Health Trusts. Despite a limited amount of research, prisoners and individuals with mental health problems have been highlighted as being particularly vulnerable in terms of suicide. Therefore a comprehensive study investigating the outcomes of mentally disordered offenders, such as mortality will contribute to the knowledge base and identify those who are particularly vulnerable. Readmission rates to general or secure psychiatric care are also under-researched yet highlight the ongoing difficulties experienced by these patients and as such demonstrate the need for long-term support. This is vital for planning provision and informing practice. This will be realised through the publication of journal articles and presentations at conferences. Journal articles and conferences are likely to be viewed and attended by clinicians and staff working in the field of forensic mental health. This target audience will be able to recognise how these findings will be relevant to individuals on their case load and therefore plan for additional support in an individual’s care pathway should they require it. This study is the first study of forensic psychiatric patients in England and Wales to implement this length of follow-up. The research team hope to expand the knowledge base surrounding the outcomes of patients discharged from medium security and subsequently inform service provision. One way in which expanding the knowledge base may benefit service provision is to highlight which groups of individuals may be particularly vulnerable to experiencing readmission to psychiatric care or excess mortality. This will be done through the publication of journal articles and presentations at conferences. This may result in additional support being offered to these individuals by professionals who work in the domain of forensic mental health, and therefore who could also target interventions accordingly.

Outputs:

The findings from the research project will form the basis of a PhD study and will also be published in peer-reviewed journals and presented at conferences. There are several types of relevant journals with suitable audiences. For example, descriptions of the cohort and change over time will be published in forensic mental health or psychiatry journals. Predictors of specific outcomes such as suicide will be published in journals focusing on such outcomes. The characteristics and outcomes of subsamples of the cohort will also be compared, and these will be published in journals focusing on specific diagnoses or types of offences. Arnold Lodge provide a high-cost, low-volume service and works closely with commissioners from NHS England in order to match resources to need. The outputs will also be directed at commissioners to help them understand the requirements of future service provision. All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide. A summary of the findings will also be presented at Arnold Lodge to clinicians and staff. Key audiences for outputs: · Clinicians and healthcare staff (inpatient and community services) · Academics and researchers · Patients and service users · External organisations such as the Ministry of Justice, National Offender Management Service (findings relevant to specific organisation). MOJ has only been involved in the capacity of providing the reconviction data from the PNC and the National Offender Management Service granted the approval for the project. Expecting a one page summary report upon completion of the project detailing findings relevant to reconviction and offending. (More generally individuals working in a variety of professions who work/have contact with mentally disordered offenders, and organisations who provide care and services). These people will be reached through journal articles, presentations and conferences. Journal articles: The previous project was able to publish findings in a variety of journals including the British Journal of Psychiatry, Archives of Suicide Research, and the International Journal of Forensic Mental Health. The research team endeavour to publish the findings from this project in the same or similar journals. For example, descriptions of the cohort and change over time will be published in forensic mental health or psychiatry journals. Predictors of specific outcomes such as suicide will be published in journals focusing on such outcomes. The characteristics and outcomes of subsamples of the cohort will also be compared, and these will be published in journals focusing on specific diagnoses (such as personality disorder) or types of offences (such as sexual offences). Conferences: The ALACRITy research team consists of academics and clinicians, all of whom have affiliations and membership with different organisations. For example, some are members of the British Psychological Society. Affiliation with the BPS will provide the opportunity to present at conferences to professionals with a psychological background. The BPS has a separate strand, specifically for members interested in Forensic Psychology. Presenting at the annual Forensic Psychology BPS conference will allow the research team to disseminate the findings to psychologists who work with offenders and mentally disordered offenders. Some members of the research team are consultant psychiatrists and thus have access and means by which to disseminate findings to professionals working in psychiatry at relevant conferences. Conference presentations will enable the findings to reach a wider audience, at a national and potentially an international level. Delegates are likely to include individuals from a variety of professions working with mentally disordered offenders such as social workers and nursing staff, organisations within the criminal justice system such as the National Offender Management Service, and policy makers and commissioners. Disseminating the findings to professionals working across a variety of fields will enable them to apply the findings in a meaningful way to the capacity in which they work with mentally disordered offenders. Presentations: A summary of the findings will be presented at the Clinical Governance and Academic Programme at Arnold Lodge. All staff at Arnold Lodge are invited to attend this programme. This will provide the opportunity to present findings to staff directly involved in the care of patients at Arnold Lodge. The research team will also aim to present findings at other secure services within the Trust that provide care to patients discharged from or admitted to Arnold Lodge such as the Wells Road Centre. The research team have also been invited to present findings at a Low Secure service in Northamptonshire. The findings will also be presented at the Institute of Mental Health, Nottingham and the University of Leicester to clinical academics, researchers and students. Presenting to academics, researchers and students will be beneficial in inspiring ideas for further research in the area. The research team will also aim to present findings at the annual Trent Study Day. Hosted by Nottinghamshire Healthcare NHS Foundation Trust, the Trent Study Day brings together professionals working in secure forensic care within the Trust and across the country. Findings will also be presented at the East Midlands Recovery and Outcomes Group. This group is chaired Rethink Mental Illness and is attended by service users and healthcare staff from secure psychiatric services in the East Midlands. This specific method will allow both healthcare professionals and service users to be informed of the findings of the project. It’s important that service users are aware of current research and how this research could benefit service provision. The expected end date for the research project is May 2018. The target date for completing the academic output (thesis) is December 2018. The research team also aim to submit a summary of the findings for publication in a peer-reviewed journal by the end of December 2018.

Processing:

Nottinghamshire Healthcare NHS Foundation Trust, specifically Arnold Lodge will be responsible for transferring the necessary identifiers to NHS Digital to obtain mortality and Hospital Episode Statistics data. Identifiers are necessary for matching purposes, so that patients in the cohort can be matched to mortality and HES data by NHS Digital and the ONS, and for this outcome data to be matched to individual patients upon return. The minimum number of identifiers necessary will be transferred to NHS Digital for the purpose of obtaining this date. The identifiable information sent to NHS Digital will comprise the names, dates of birth, aliases, alternative dates of birth and NHS numbers (where possible) of approximately 850 patients admitted to Arnold Lodge between July 1983 and 30th June 2013. Each individual in the cohort will also be assigned a unique ID number. NHS Digital will obtain mortality data from the ONS. NHS Digital will match the identifiers provided by Nottinghamshire Healthcare NHS Foundation Trust to HES data and collate the variables requested for the purpose of the research project. The variables requested are dates of admission, admissions sources, dates and destinations of discharges, location of treatment and duration of spell. The data requested from the ONS via NHS Digital are date of death, cause of death and Strategic Health Authority or usual residence of the deceased. HES and mortality data are requested for the period between July 1st 2003 and 30th June 2013. When returning the data, NHS Digital will leave the unique ID provided when the cohort was first transferred to NHS Digital intact to allow the returned HES and mortality data to be matched to each individual in the main research database. This will ensure that the correct data is matched to the correct individual in the main research database. Upon receipt, the file will be stored in a secure file on the Trust’s secure network and only accessible to those members of the research team authorised to have access. The data provided by NHS Digital will be matched to each individual in the cohort. Summary variables, such as whether a patient has been re-admitted noted as yes or no, from the data provided by NHS Digital will be added to the research database where all the project data is stored. The data supplied by NHS Digital will form part of a larger research project. It will be added to data gathered from patient records at Arnold Lodge such as admission characteristics and other outcome data such as reconviction. For the purpose of matching outcome data, each individual will be assigned a unique study code. A main research dataset will contain all of the data necessary to conduct the study and will be matched to individual patients through their unique study code. The database created for this research project will be pseudonymised, and will include only the individuals’ unique study code for the purposes of matching and collating data. A key for the study codes containing other identifiers such as names, dates of birth and NHS number will be kept entirely separate from the main research database and will be used to obtain outcome data and maximise the accuracy when collecting and collating data for the purposes of the project. As part of this research project, the research team have obtained Police National Computer (PNC) reconviction data from the Ministry of Justice (MoJ). This followed a Data Sharing Agreement between the Ministry of Justice and Nottinghamshire Healthcare NHS Foundation Trust. A research steering group has been created to guide the research project; the ALACRITy research team. The ALACRITy research team comprises clinicians and academics who may be familiar with some of the patients in the cohort in their role as Responsible Clinician or may have had contact with some of these patients in their capacity as clinicians. A Forensic Research Fellow within Nottinghamshire Healthcare NHS Foundation Trust and a Senior Research Fellow at Arnold Lodge will act as the ‘data portal’ for transferring identifiers to and receiving data from NHS Digital, they will supervise a PhD student at the University of Leicester who is based at Arnold Lodge. The PhD student will be the primary member of the research team collecting and collating the data for the research project under the supervision of the Forensic Research Fellow and Senior Research fellow and also a Lecturer at the University of Leicester. The Forensic Research Fellow is an employee of Nottinghamshire Healthcare NHS Foundation Trust, who are acting as a Data Processor. The PhD Student is an employee of the University of Leicester who are acting as a Data Processor. 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). The team members will have access to the patient identifiable information for the project for the purposes of matching the data prior to anonymisation and for transferring the identifiers to NHS Digital. Only authorised members of the ALACRITy research team will have access to the outputs and anonymous data in the research database, which will include the shared information provided by NHS Digital. Individuals with a Trust contract who join the research team over the course of the study may also have access to the shared information in the form of the pseudonymised dataset and outputs from the project. Access to the file where the project data is stored is restricted. Authorisation to access this folder is granted by Head of Research and Innovation for Nottinghamshire Healthcare NHS Foundation Trust who will not have access to the research data. All data for the project will be stored in a project-specific folder on a shared drive on Nottinghamshire Healthcare NHS Foundation Trust’s secure server. Only authorised members of the research team will have access to the data file. Access to this file is restricted and authorised members of the research team are required to complete a specific electronic form for authorisation before access can be permitted. Head of Research and Innovation at Nottinghamshire Healthcare NHS Foundation Trust, authorised who has access to the project-specific folder on the shared drive. The shared drive can only be accessed by logging onto a password protected computer with the appropriate personal log in details. A statistical software package (SPSS Version 21) will be used to analyse the dataset. Statistical analysis will only take place on pseudonymised data on Trust premises and only aggregate data will be published. Processing and storage of the data will take place on a Trust networked computer within Arnold Lodge which can only be accessed by people authorised to have access. The data from NHS Digital will not be linked to any other data other than those and for the purpose described in this application. All processing of ONS data will be in line with the standard ONS terms and conditions.

Objectives:

Arnold Lodge Medium Secure Unit is a medium secure psychiatric hospital situated in Leicester and run by Nottinghamshire Healthcare NHS Foundation Trust. Arnold Lodge receives referrals from courts, prisons, the probation service, social services, high secure hospitals and other mental health units for forensic psychiatry assessment and/or treatment. The patients are mainly mentally disordered offenders. The purpose of the research project for which this data is required is to examine the outcomes of a cohort of first admissions discharged from Arnold Lodge Medium Secure Unit (MSU). Nottinghamshire Healthcare NHS Foundation Trust provides medium secure inpatient services to adults with a mental illness and/or a personality disorder at Arnold Lodge in Leicester. One of the outcomes of interest is mortality. The current research project is an extension of a previous project, the Arnold Lodge Admissions Cohort and Intervening Treatment Study (ALACRITy) which examined the outcomes of a cohort of patients admitted to Arnold Lodge between July 1983 and 30 June 2003. This project was subsequently extended to June 2009, and further examined the mortality of patients admitted to the unit up until this date (REF: NIC-147914-6J60Y, NIC-366034-S4P5G). The original ALACRITy study (1983-2003) identified high excess mortality. Of those 550 patients that were discharged from the unit, 57 (10%) had died, of whom 18 (32%) had died by suicide. The risk of death from any cause for the entire cohort was six times greater than that expected in the general population. The risk of death from suicide was 32 times higher than expected in the general population. These findings highlighted that patients discharged from medium security are vulnerable in terms of mortality, particularly from suicide. The mortality rates of patients discharged from secure care is under-researched in comparison to other outcomes such as reconviction. However, the high mortality rates found amongst prisoners and those suffering from a mental disorder are well documented in the literature. Another outcome of interest for the project is readmission, to both general and secure psychiatric care. The original study reported that in total 339 patients (61%) were readmitted to general or secure psychiatric care. Furthermore, over a third (38%) of these patients were readmitted to medium or high secure psychiatric care over the course of the follow-up period. Few studies of patients discharged from secure services have examined readmission. However, those that have also reported high rates of readmission to general and forensic psychiatric care. Readmission to general or secure psychiatric care highlights the ongoing difficulties experienced by these patients and as such demonstrates the need for long-term support. Highlighting the rate of readmission is vital for planning provision and informing practice. The current project builds upon the previous project by extending the admission period for the cohort and extending the follow-up period. Patients admitted to Arnold Lodge between July 2003 and the 30 June 2013 will be added to the original cohort to examine the outcomes of a more contemporary cohort. This is important given the changes in service provision at Arnold Lodge and elsewhere. For example, the number of beds has increased since the original study census and Arnold Lodge now provides a dedicated women’s service. The follow-up period for the original cohort will also be extended by 10 years from 30 June 2003 to 30 June 2013, enabling the research team to examine the long-term outcomes of the previous cohort of patients. This study is the first study of forensic psychiatric patients in the United Kingdom to implement this length of follow-up. The new admissions cohort (2003 to 2013) will also be followed up until 30 June 2013 to examine their outcomes. For the purposes of this research project, mortality data and admission/readmission data will be requested from NHS Digital for the cohort between 1st July 2003 and 30th of June 2013. The length of time for which this data is requested is directly related to the aims of this project. The addition of 10 years for an extended follow-up period for the original cohort (July 1983-June 2003) will enable the research team to examine even longer term outcomes of patients admitted to Arnold Lodge. The addition of a new 10 year cohort will also enable the research team to examine the characteristics and outcomes of a more contemporary cohort of patients admitted to medium secure care. In conjunction with these outcomes, the project also aims to capture reconviction rates for the cohort. Therefore, data received from NHS Digital will be linked with outcome data obtained from the Ministry of Justice to provide a single follow-up record for each individual patient. The data will be linked using the study id and all identifiers removed from the final follow-up record. Arnold Lodge is a medium secure hospital that primarily admits patients from prison and sent by the courts due their combination of mental health difficulties and risk to others. As such their mental health and offending are linked and the service aims to help patients to not only improve their mental health but also to reduce their risk of offending; in order to have a happy and productive life following discharge. If the patient’s mental health were to deteriorate after discharge they may be more likely to reoffend and also if they were to reoffend they may be at increased risk of further deterioration due to their mental health difficulties. For this group, mental health status and offending are closely linked and are the dual focus of treatment, care and recovery. The availability of mortality and readmission data is important to better consider time at risk when analysing conviction data. Whilst reconviction is an important outcome, data requested from NHS Digital will assist in providing important clinical information which is vital in understanding a vulnerable and complex population such as this. The research team aim to expand the knowledge base surrounding the outcomes of patients discharged from medium security and subsequently inform service provision. This project is also being undertaken to form the basis of an educational qualification at the University of Leicester, and is sponsored and supported by Nottinghamshire Healthcare NHS Foundation Trust. No element of this work will take place outside of England and Wales and at no point will data be made available to third parties. Any results reported for publication or academic purposes will be in aggregate form meaning that no individual will be identifiable. All outputs will contain only data that is aggregated with small numbers suppressed in line with the HES Analysis Guide.