Psychotic experiences as risk markers for suicidal behaviour in high risk groups

‘On average, 13 people kill themselves every day in England. The death of someone by suicide has a devastating effect on families, friends, workplaces, schools and communities, as well as an economic cost. If we want to improve the life chances of future and current generations, we need to address this shocking reality and do more to prevent suicides.’ - Ministerial Foreword, ‘Preventing suicide in England: Third progress report’ (UK Department of Health, 2017).

The Royal College of Surgeons in Ireland (RCSI), who are the sole data controller who also process data, requires the Adult Psychiatric Morbidity Survey 2014 (APMS 2014) data in support of a RCSI PhD Project. The objective of the study is to explore whether psychotic experiences (PE) in the general population (English adults, aged 16 and over) are risk markers for suicidal behaviour.

There has been extensive research on psychotic experiences in the general population over the past two decades. These are hallucinatory experiences and delusional beliefs, similar to the classic positive symptoms of schizophrenia, but typically associated with at least some degree of intact reality testing (i.e. they do not necessarily imply mental disorder). Psychotic experiences are reported by 5% to 8% of the general adult population. Research has demonstrated that psychotic experiences are associated with high risk for a broad range of mental disorders and poor mental health outcomes in general. More recently, psychotic experiences have been shown to be associated with suicidal thoughts and behaviour (from now ‘suicidality’); individuals with PE are 2-fold more likely to experience suicidal ideation and up to 11-fold more likely to attempt suicide compared to those without psychotic experiences.

Previous research has shown associations between a number of physical health conditions and psychotic disorder. For example, meta-analytic results showed the rate of psychosis among people with epilepsy to be 7.8 times higher than in people without epilepsy. However, research is yet to look at the same conditions with the broader phenomena of psychotic experiences.

Research has also shown individuals with certain physical health conditions to be at increased risk of suicidality compared to individuals without these physical health conditions. For example, individuals with epilepsy are at 2-fold increased odds of suicidal ideation and 4.5- fold increased odds of suicide attempt compared to individuals without epilepsy. It is unknown whether having both a physical health condition in addition to having psychotic experiences increases the risk of suicidality more so than either one in isolation. In this instance, psychotic experiences would be a ‘risk marker’ for suicidality.

Other groups at ‘high risk’ for psychotic experiences and suicidal thoughts and behaviour include individuals with asthma, individuals who have had a stroke, LGBTQ groups, individuals exposed to trauma and individuals with mental health conditions.

A number of papers have been published on previous APMS data (1993, 2000 and 2007), looking at suicidal behaviours and psychotic experiences separately. However, to RCSI'S knowledge, only two studies to date have looked specifically at the association between psychotic experiences and risk for suicidal thoughts and behaviour in the APMS datasets, of which both showed an increased risk for suicidal ideation and suicide attempt in individuals who had reported psychotic experiences. No research to date has used the APMS datasets to explore psychotic experiences as a ‘risk marker’ for suicidality within subgroups known to be at increased risk.

This PhD project aims to:

• Determine prevalence of psychotic experiences in groups known to be at high risk for suicidality (physical health conditions, mental health conditions and minority groups).

• Compare prevalence of psychotic experiences over time, using APMS datasets from 1993, 2000, 2007 and 2014

• Explore whether individuals from high risk groups are at even more increased risk of suicidality if they also report psychotic experiences

• Determine whether associations between psychotic experiences and suicidality in high risk groups are explained by co-occurring mental health conditions, cognitive variables or demographic variables.

Data from the APMS datasets will be analysed using Stata software. Statistical analysis will be performed using logistic regressions to determine and quantify risk of suicidality in high risk groups using psychotic experiences as risk markers. The data will not be used for commercial purposes, not provided in record level form to any third party and not used for direct marketing.

The RCSI was founded by Royal Charter, granted by Charles III in 11th February 1667, to control the practice of surgery and make provision for surgical education. A supplemental charter was granted by Queen Victoria in 1844, instituting the RCSI Fellowship by examination and confirming its role in the professional education of surgeons.

The Royal College of Surgeons Ireland (RCSI) is a registered charity (No.20001957) with the Charities Regulator (Ireland) and is subject to the Charities Act 2011. Chapter 1, Section 4 of the Charities Act establishes that the nature of a charity is to operate for the public benefit if it is for charitable purposes. The purpose of medical research is compatible with the purposes defined within Chapter 3, Section 1(d) of the Charities Act for the advancement of health or for the saving of lives, paragraph 3(b) states that this includes the prevention or relief sickness disease or human suffering (http://www.legislation.gov.uk/ukpga/2011/25/section/3).

In further guidance from the Charities Commission in relation to purposes, Section 6 states that the purposes extend beyond the treatment or provision of care, and includes Health Research charities https://www.gov.uk/government/publications/charitable-purposes.

The Commission also states that the Charity must also clearly define its purposes within its governance documents or ‘objects’ and the charity must be registered with the Charities Commission and its registration can be checked on-line, the purposes of the charity are also defined within its registration. (https://www.gov.uk/government/collections/charitable-purposes-and-public-benefit).

‘Necessity’: Throughout the application process, the necessity of the processing for the performance of the task has been assessed. This included but was not limited to ensuring appropriate minimisation of the data to ensure that only the minimum amount of data required are processed. During the application process it has been considered whether the information that the processing aims to determine is already available from other sources or whether the task could be performed using publicly available data or data from alternative sources than NHS Digital. Consideration has been given to whether the volume of data being requested is proportionate to the expected benefit and, through examination of the expected benefits consideration has been given to whether the task is itself necessary. The applicants have been involved in this process and participated in teleconference with our data production team to agree which data products and fields were appropriate for use for the purpose of processing. Therefore, we are satisfied that this request is appropriate, necessary and proportionate for the performance of the task described in the Purpose statement and that there is no other reasonable means for the data processor to achieve their purpose that is less intrusive to the data subjects.

Processing data for the purposes of research is considered to be one of RCSI’s public tasks. The processing of the APMS dataset is considered necessary as there are no other means of examining the objectives in a less restrictive way. Individuals will not be harmed through the processing of the data.

The Data Protection Act 2018 s7(1)(a) defines ‘public bodies’ for the purpose of the GDPR as “a public authority as defined by the Freedom of Information Act 2000”. The FOI Act 2000 Part 1, section 3 (1)(a)(i) specifies that a public authority means any body which is listed in Schedule 1. Schedule 1 of the FOI Act 2000 lists “Maintained schools and further and higher education institutions” as public authorities.

Section 8 of the Data Protection Act 2018 clarifies that “In Article 6(1) of the GDPR (lawfulness of processing), the reference in point (e) to processing of personal data that is necessary for the performance of a task carried out in the public interest or in the exercise of the controller’s official authority includes processing of personal data that is necessary for… (d) the exercise of a function of the Crown, a Minister of the Crown or a government department”. Universities which have a royal charter granting them a right to perform research would therefore be considered to be exercising a function of the Crown in undertaking that research.

Article 9(2)(j) – "processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject"

The data are required for research purposes - meeting the conditions in the DPA 2018 Schedule 1 Part 1 (4) - which GDPR Recital 52(2) determines is an appropriate derogation from the prohibition on processing special categories of personal data.

In accordance with GDPR Article 89(1) processing is subject to appropriate safeguards. These include:

i. The data will be pseudonymised prior to dissemination by NHS Digital to the data recipient.

ii. The data recipient’s technical and organisational measures to safeguard the data have been assessed and meet NHS Digital’s acceptance criteria (see sections 2 and 5b of this application for further details);

iii. The requested data has been assessed as proportionate to the aim pursued (see section 5a of this application for further details);

iv. Controls, data retention and processing activities have been assessed to ensure respect to the essence of the right to data protection (see sections 5a, 5b and 8a of this application for further details);

v. v. Measures to protect the rights and freedoms of data subjects have been assessed including transparency (fair processing) publishing subject’s rights to withdraw consent and/or have their data erased or rectified, etc.

The UK Data Service (UKDS) will grant system access to pseudonymised APMS data to the Royal College of Surgeons in Ireland, where it will be downloaded and stored securely on an internal U drive, and the core dataset will be accessed on site only by members of the RCSI Psychiatry department (four individuals) who have PhD studentships or are substantive employees.

Prevalence of psychotic experiences within the general population will be looked at within the APMS 2014 dataset. This will be compared with previous APMS datasets (1993, 2000 and 2007) to see whether the prevalence of hallucinations has changed over time. RCSI already holds copies of previous APMS datasets. As the data is cross-sectional, it cannot be linked to previous individuals from previous APMS datasets, only combined with datasets to provide more observations (and therefore increase total numbers, especially when prevalence for certain disorders is low). The APMS 2014 dataset will also be combined with the previous 2007 APMS dataset (and the APMS 2000 dataset, where possible) in order to enlarge sample sizes in disorders where prevalence is low. This will be done using the ‘merge’ function in Stata.

The relationship between psychotic experiences and suicidal behaviour will be explored in groups considered to be at high risk of suicidal behaviour; those with physical health illnesses such as epilepsy and asthma, and mental health illnesses such as depression and social phobia. Adjustments for other mental health disorders and demographic variables will be made to see if the relationship is partly explained by these variables.

This data will be analysed on Stata software to explore the associations between psychotic experiences and suicidality.

Logistic regressions will be conducted to see whether there is an increased risk of:

• Suicidality outcomes:

• Suicidal ideation and attempt (separately) in individuals reporting psychotic experiences

• Suicidal ideation and attempts (separately) in individuals with physical health conditions (all physical health conditions looked at in the APMS will be explored for completeness, but groups known to be at risk for psychotic disorder such as epilepsy, asthma, stroke)

• Suicide ideation and attempts in individuals reporting mental health conditions (all mental health conditions assessed in the APMS surveys)

• PE Outcomes:

• PE in individuals with physical health conditions

• PE in individuals with mental health conditions

• PE and Suicidality outcomes:

• Suicidal ideation in individuals with physical health conditions who also experience PE

• Suicide attempt in individuals with physical health conditions who also experience PE

• Suicidal ideation in individuals with mental health conditions who also experience PE

• Suicide attempt in individuals with mental health conditions who also experience PE

Flows of data and the APMS 2014 dataset will not be made available to any third part except in the form of aggregated outputs with small numbers suppressed. There will be no requirement, nor attempt, to re-identify individuals from the data.

The 2014 APMS dataset (English adult population (aged 16 and over) is held on behalf of NHS Digital by the UK Data Service (UKDS) (www.ukdataservice.ac.uk ) and UKDS are responsible for dissemination under direction by NHS Digital. RCSI will get the whole dataset; there is no facility to select individual variables. They will be able to download the dataset from UKDS for the period specific within the DSA and they must securely destroy all local copies of the dataset when the DSA expires and notify DARS in line with standard procedures. This 2014 version of the dataset available via DARS has been redacted on Disclosure Control Procedure advice to minimise the likelihood of individuals being able to identify anyone taking part in the survey.

NHS Digital reminds all organisations party to this agreement of the need to 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 following outputs will be produced:

• Reports of interim results will be provided to RCSI internal PhD examiners annually in the form of a ‘mini-viva’. These will be competed each October (2018, 2019, 2020).

• Final report of results will be submitted to RCSI examiners and one external examiner at the end of the PhD, due to be completed in October 2021. This will cover all findings of individual studies, including, but not limited to:

• The association between Epilepsy, PE and suicidality

• The association between Asthma, PE and suicidality

• The association between Stroke, PE and suicidality

• The association between trauma, PE and suicidality

• The association between LGBTQ, PE and suicidality

Adjustments for mental health conditions, cognitive variables and demographic variables will be made to see whether these influence the relationship between these phenomena.

The results from analyses using the APMS 2014 dataset will be published in peer-reviewed academic journals, as well as disseminated in presentations where possible. It will also be written up as part of a PhD thesis (by October 2021). Academic papers will be published in high impact factor, peer reviewed journals on the prevalence of psychotic experiences in individuals with physical and mental health conditions, as well as the association between high risk groups, PE and suicidality.

Journals aimed for include: Schizophrenia Bulletin, British Journal of Psychiatry, Psychological Medicine and Psychiatry Research, amongst others.

For each paper published, a short presentation will be developed to summarise overall findings and disseminated in academic meetings within RCSI, as well as externally at conferences. Conferences aimed at to submit research to include the International Association for Youth Mental Health conference, the Schizophrenia International Society conference and the MQ’s Mental Health Science Meeting in London, which focuses specifically on self-harm and suicide in 2019. All publications and conference presentations are promoted on twitter, via professional twitter accounts for the individual for whom this PhD project this relates to, and their PhD Supervisor (>1500 followers).

The intended target audience for these results are the scientific and clinical community including specifically clinicians and researchers working in the field of mental health.

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.

The APMS datasets are the largest datasets in the world using consistent methods. The APMS 2014 dataset will allow exploration of the relationship between PE and suicidality and to see whether this relationship has changed over time, which would not be possible using other datasets.

The analysis of this data will contribute to the scientific literature and to our understanding of mental illness and suicide. The analysis of this dataset will allow us to quantify how many individuals have psychotic experiences and whether these experiences increase the risk of other mental and physical health comorbidities as well as increasing the risk of suicidal behaviour.

The research team in RCSI will be disseminating the results to the research and clinical community in order to realise the benefits of the research. The research team has strong connections to the clinical psychiatry department in Beaumont Hospital, Dublin, the team expect these benefits to be realised almost immediately upon completion of data-analysis, as results will be fed back at departmental research meetings. Outside of the RCSI clinical environment, the team expect these benefits to be realised as and when results are published in high impact journals throughout the course of the PhD project.

In 2012, the UK Government policy ‘Preventing suicide in England - A cross-government outcomes strategy to save lives’ highlighted the need to ‘reduce the risk of suicide in key high-risk groups’ as one of their 6 key areas for action. Notably, the Governments second annual report after the suicide prevention policy, ‘Preventing suicide in England: two years on’ highlighted that despite a fall in suicide rates overall there was an increase in suicide rates in younger age groups. This is also true in the Irish context, with the Irish suicide prevention strategy (‘Connecting for Life’) reporting Ireland has the ‘4th highest suicide rate in the 15-19 age group across 31 European countries’. Psychotic experiences are reported by 17% of children in the general population. If they are indeed a marker of risk for suicidal behaviours, future suicide prevention policies should include the need for their assessment in primary and mental health services as well as equipping teachers to pick up on and explicitly about, in order to reduce suicide. Research the group has conducted previously found that 25% of suicide attempts and deaths combined could be avoided if psychotic experiences were to be eliminated from the population. The aim is to reach policy makers through dissemination of the results at events run by the Irish Health Service Executive (HSE) in Ireland and the National Health Service (NHS) in the UK. Additionally, policy makers will be influenced via results disseminated through both social media such as Twitter, and the press.

As well as increasing survival rates, there is also an economic benefit to updating policy on suicide prevention. The cost of per suicide is £1.7 million in England and £1.5 million in Ireland. As stated in documentation from the Irish Government, (Reach Out : National Strategy for Action on Suicide Prevention), ‘investment in suicide prevention and mental health promotion could yield significant returns in terms of offsetting and reducing lost market output and lost non-market output associated with suicide and DSH in Ireland. The potential economic gains to society are, therefore, significant’. It is hoped that the results will influence a change in clinical management of individuals in these ‘high-risk’ groups. If, as the team suspect, PEs are risk markers for suicidality, the team will propose that clinicians should ask about them as a routine part of any mental health assessment. The results of this research will change the current understanding of suicide risk, expanding knowledge on which subgroups of the population are at the highest risk.

This project is in support of a PhD research study.

Yielded Benefits is not a requirement for new applications.