Analysis of Adult Psychiatric Morbidity Survey 2014-Mood disorders and Personality Disorders

This agreement is an extension to allow University of Birmingham to continue to hold and process data disseminated under the previous version of the agreement.

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The University of Birmingham requires Adult Psychiatric Morbidity Survey (APMS) data for an analysis of mood disorders and personality disorders.

The purpose of the study is to continue research on mood disorders and personality disorders, in order to ultimately improve the health care that this group receive. The aims of the research are to analyse the APMS data to better understand the causes of mental disorders, health services access, inequalities and links to other disorders.

The justification for processing personal data is GDPR Article 6(1)(e) - Public task: Processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller and 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 processing is necessary as it will be a targeted and proportionate way of achieving the purpose. The public interest aligns with the aims of the research purpose use of the data; that is to investigate the causes of mental disorders, health services access, inequalities and links to other disorders. This will enable a deeper understanding of these issues and for evidence to be generated which can impact on public policy and planning of publicly funded health care services.

The University of Birmingham has determined that there does not appear to be any moral or ethical issues raised by the dissemination of the APMS, which will be through publication of research papers, blogs and potentially media outlets and public events and that the risk of potential harm to the public appears low.

The APMS data request will achieve the aims identified by using the data for quantitative data analysis. The analyses will use multiple variables available in the APMS dataset regarding mood disorders, personality disorders and clinical and socio-economic variables. Techniques to be used will include descriptive statistics, regression modelling (linear, logistic, probit, multi-variate), the use of parametric and non-parametric tests and path (mediation) modelling. These analyses will be written up for publication in academic papers, and also for forms suitable for the lay public, where appropriate.

The background to this data request is that the applicant was the lead for providing the justification of data collection related to bipolar disorder for the Adult Psychiatric Morbidity Survey 2014 and was involved in the basic analysis. The applicant is the lead author of the chapter on Bipolar Disorders (chapter 9) in the main APMS 2014 report published by NHS digital. The applicant is also part of the ongoing APMS 2014 group and has worked on the public data from the previous APMS surveys and examples of these analyses and outputs are:

https://www.sciencedirect.com/science/article/pii/S0165178112005379

https://academic.oup.com/schizophreniabulletin/article/40/2/269/1944312

https://www.sciencedirect.com/science/article/pii/S2215036615000553

This data request project is not specifically linked to any other research programme, but as stated above there may be synergistic analyses with colleagues who are working on the APMS data (and already have the data), consistent with normal academic practice.

The data subjects are those that participated in the Adult Psychiatric Morbidity Survey, which was a general population household survey.

The purpose of the project is that mood and personality disorders are common and are amongst the top 10 global causes of life years lived with disability (Gore et al., 2011). Costs to society are high, (Pari et al., 2014) in part because of the loss of functioning and employment these conditions entail (MARWAHA et al., 2013) as well as direct healthcare costs. Rates of self-harm and completed suicide are also high, and this group die earlier than the general population, not only because of suicide but because of increased rates of cancer and cardiovascular diseases (Hayes et al., 2015). Despite the substantial needs and morbidity of this population there is still a limited understanding of the socio-economic, physical and clinical correlates of people with these conditions. Also, the extent to which they use health and social care services and what factors might impact on this require further investigation.

The primary aims of this work will to understand the socio-economic, clinical and service level associations with having a mood disorder and / or personality disorder in order to better develop mental health care in the UK.

The data that is required is the full dataset of the Adult Psychiatric Morbidity Survey 2014. This dataset will allow analysis as detailed above and in the protocol. The dataset is pseudonymised. Multiple analyses are planned which does tend to take substantial time to be done correctly. Writing up the analysis for publication and other forms of dissemination will also take substantial amounts of time. The dataset is also requested for a three-year period to take into consideration the time taken to employ researchers or for PhD students to work on data. The whole dataset is requested to ensure there is geographical spread so that results are representative.

There are no less intrusive ways of achieving the purpose, because there are no other sources of data of sufficient quality for the proposed analysis, and in order to achieve the study aims. The data requested is the minimum needed to ensure that analyses are robust and provide the needed information in the public interest.

The University of Birmingham is the sole Data Controller who process data under this agreement.

This study is not engaging with any Patient and Public Involvement groups, although this will be considered throughout the study period where opportunities arise.

There are no funders or commissioners for this study.

This extension agreement is to allow the University of Birmingham to continue to hold and process the APMS 2014 data disseminated under the previous version of the agreement.

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This request is for flow of data out of NHS digital in the form of the APMS 2014 dataset. Some of this relates to health-related data given that some screening questionnaires were used in the conduct of the survey. The flow of data will be to the University of Birmingham and will be in pseudonymised form. There are no subsequent flows of data.

There will be no requirement or attempt to reidentify individuals using the APMS 2014 dataset.

The data is being statistically analysed by University of Birmingham, using the data for quantitative data analysis. The analyses will use multiple variables available in the APMS dataset regarding mood disorders, personality disorders and clinical and socio-economic variables. Techniques to be used will include descriptive statistics, regression modelling (linear, logistic, probit, multi-variate), the use of parametric and non-parametric tests and path (mediation) modelling, as described above and in the protocol, in order to achieve the stated purpose. Data will not be linked to other datasets. There will be no requirement or attempt to re-identify individuals.

Data processing will be carried out by substantive employees of the University of Birmingham, who have been appropriately trained in data protection and confidentiality. The data may also be used for the same purpose as described in this agreement by PhD / post graduate students who are registered for their degree with the University of Birmingham, and are being supervised by the applicant, who is a substantive employee of the University of Birmingham at and a member of the Institute for Mental Health.

The data will be accessed and secured in line with university regulations, this includes access which is controlled by username and password and hardware which is encrypted for security.

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 i.e.: employees, agents and contractors of the Data Recipient who may have access to that data).

Papers will be submitted for publication in peer reviewed journals (e.g. British Journal of Psychiatry, Journal of Affective Disorders) by March 2025, which will be made open access wherever possible so that academics, researchers, clinicians and the public can benefit from the findings. Many of the analyses will focus on healthcare use and will be used to drive thinking and debate around the accessibility and organisation of mental health services (and other services), prevention of mental health problems and key components of interventions. In total, the results of analysis will target improving mental health care and outcomes of people with mood disorders and personality disorders.

In March 2022 a paper entitled: "Co-occurring psychotic and eating disorders in England: Findings from the 2014 Adult Psychiatric Morbidity Survey" was submitted to the International Journal of Eating Disorders. Currently it is being considered by the journal editor.

There is a paper in preparation using the data which is focussed on the impacts of bullying on the risk of experiencing bipolar disorder symptoms. The paper is expected to be submitted for publication in a peer reviewed journal by October 2022.

The aim of the dissemination activities shall be two-fold: to enable the engagement with the scientific and policy-making communities / to ensure that knowledge developed by the research can benefit these communities. Engagement with policy makers will be by talks and meetings about results.

Presentations may be given about the results at conferences (e.g. the International Congress of the Royal College of Psychiatrists, European Psychiatric Association) after sufficient data analysis and results will be highlighted via well engaged social media accounts. The press will be engaged via the Institute for Mental Health’s communications department.

The level of data contained in the outputs will be aggregated data (with small numbers suppressed) and statistical analyses. Small numbers will not be linked to geographical distribution to protect anonymisation.

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 (https://code.statisticsauthority.gov.uk/working-in-line-with-the-code/) 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 overall benefits of this work will be:

1. To better understand the mechanisms by which mental disorders develop.

2. Understand their nature and associations (clinical, socio-economic, physical).

3. How this knowledge can be used to improve interventions to help people with mental health problems.

4. This knowledge will be used to develop better mental health services, improve their accessibility and ensure those who need it , get timely effective treatment.

The dissemination will benefit the provision of health care or adult social care by informing clinicians, researchers and policy makers about the needs of people with mood disorders and / or personality disorders for care, whether those needs are being met, where inequalities exist in service provision and what the parameters, facilitators and barriers might be to overcoming these issues. They will be engaged by dissemination activities such as journal publications, blogs and articles which are publicly available and meetings.

Dissemination is in the public interest given that people with mental disorders and their families / partners / carers all have a legitimate interest in the knowledge that will be generated. Overall up to 10% of the population may have a mood disorder (common mental disorder) or personality difficulty at any one time so the proportion of people who might be impacted by the research is large. Public bodies such as the NHS also have a duty to provide equitable and high quality care and to correct deficits in this care where possible and the proposed work and dissemination will highlight where care could be better, as well as aiding the understanding of the causes, associations and treatment of mental disorders.

This application is not directly in support of an existing PhD/post graduate research study. However, the data may also be used for the same purpose as described in this agreement by PhD / post graduate students who are registered for their degree with the University of Birmingham and are being supervised by the applicant, who is a substantive employee of the University of Birmingham at and a member of the Institute for Mental Health.

There has been one paper published to date using this data::

Humpston, C.S., Bebbington, P. and Marwaha, S., 2021. Bipolar disorder: prevalence, help-seeking and use of mental health care in England. Findings from the 2014 adult psychiatric morbidity survey. Journal of Affective Disorders, 282, pp.426-433.

The paper outlines how common bipolar disorder is. It also outlines the characteristics of people who are able to access a support service and possible reasons why. The paper concludes that the care for people with bipolar disorder is suboptimal in the England, and how and why improvements should be made.