Emerging eviDence on the impact of COVID-19 on mental hEalth sErvices and health inequalities in highly dePrived communities (DEEP)

University of Newcastle Upon Tyne requires access to NHS England data for the purpose of the following research project:

Emerging eviDence on the impact of COVID-19 on mental hEalth sErvices and health inequalities in highly dePrivedcommunities (DEEP)

The following is a summary of the aims of the research project provided by University of Newcastle Upon Tyne:

“This study aims to examine the impact of the COVID-19 pandemic and lockdown periods on patterns of engagement with mental health services for people from the most deprived communities in North East and North Cumbria, and determine whether these patterns were associated with health-related outcomes.

Evidence suggests that the impacts of the COVID-19 pandemic and periods of lockdown have increased the risk of mental health problems within England. It is estimated that the pandemic will lead to new or additional mental health support need for up to 10 million people in England (around 20% of the population). Evidence from previous studies illustrated that the impacts of the virus and the lockdown deteriorated population mental health and disproportionately worsened the mental health burden for more deprived populations. This can have a significant negative impact on the heath of individuals living within these areas, on their partners & wider families. The unequal impact of the pandemic is at risk of entrenching and exacerbating the existing structural inequalities in mental health among the most deprived communities.

However, there is an incomplete picture of the use of mental health services by more deprived populations, and the impact of the COVID-19 pandemic on their mental health service utilisation. Such information is essential to inform current policies looking at expansion of specialist mental health as part of national initiatives aimed at improving mental health services in England. The pandemic could provide an opportunity to rethink conventional approaches to mental health services planning to meet patients’ needs. Similarly, the threshold for hospital admission for mental illness varies between individuals and requires continuous adaptation over time. Therefore, learning from service utilisation changes due to the COVID-19 pandemic, and their consequences for people’s physical and mental health is vital to inform policy solutions for integrated service recovery and effectively plan services that reach those with the greatest needs.

The specific objectives of the study are:

• To investigate NHS service utilisation (such as care settings and pathways of care) where people were in contact with mental health services in the year prior to the lockdown across the deprived population and in specific groups such as the elderly or ethnic minorities.

• To quantify changes in their mental health service utilisation between multiple time periods across pre-, during- and post-lockdown including out of lockdown in England.

• To quantify the contribution of individual and general practitioner (GP) practical-level factors to variation in mental health service utilisation, measuring their impact on association between mental health service utilisation and health outcomes. The aim is to identify where mental health services are most effective for different population groups.

• To quantify patients’ health outcomes among the cohort between the multiple time periods, examining any associations between mental health service utilisation and patients’ health outcomes.

The study will explore advanced statistical methods to examine the effects of national lockdowns on mental health service use and its subsequent consequences while accounting for both observed and unobserved confounders. Various methodological approaches will be employed to assess any uncertainty surrounding the results. For example, one method the study will utilise is propensity score matching, which allows the creation of comparable control groups by matching individuals with similar social-demographic and clinical characteristics who did not experience the same exposure to services."

The following NHS England Data will be accessed:

• Hospital Episode Statistics

o Admitted Patient Care

o Accident & Emergency

o Outpatients

• Emergency Care Data Set (ECDS)

- Necessary to provide information on secondary care utilisation of individuals, including any associated treatments, in order to measure variations in health outcomes of those with higher usage of mental health services.

• Civil Registrations of Death - Secondary Care Cut - Necessary to provide an indication of instances of death in cohort members.

• Mental Health Services Data Set (MHSDS) - Necessary to provide information on cohort members contact with any type of secondary mental health services provided and/or funded by NHS England. This includes voluntary and involuntary inpatient treatment, outpatient attendance, community mental healthcare, and other episodes of secondary mental healthcare. The data will be used to determine the type, clinical characteristics (such as diagnosis, care clusters & Health of the Nation Outcome Scales – a routine clinical outcome measure used by mental health services) and length of service use by cohort members.

• Community Services Data Set (CSDS) - Necessary to provide information on individuals use of community health services provided through NHS Trusts, health centres, schools, mental health trusts, and local authorities. The key variables from this dataset include personal and demographic information, social and personal circumstances, diagnoses including long-term conditions and disabilities, care events plus screening activities, and scored assessments. Pseudonymised occupation data will also be accessed from this dataset. Occupation data will be used to assess the evidence linking health outcomes to income or lifestyle, it acts as a substitute for evaluating income level or lifestyle to address potential confounding factors in regression analyses. In addition, it would be used as a categorical variable, thereby minimising the risk of identifying individuals compared to income data.

• Improving Access to Psychological Therapies (IAPT) v1.5 & v2 - Necessary to provide further information on cohort members use of mental health services. This data will provide information on the use of services such as cognitive behavioural therapy, counselling and self-help support through self or GP referral. This information will provide insight into cohort member use of these types of services, including waiting time before treatment, length of treatment, any gaps in treatment spells & patient outcomes.

The level of the Data will be pseudonymised.

The Data will be limited to a study cohort created by the Data Services for Commissioners Regional Office (DSCRO). The study cohort will consist of individuals who are:

• Adults over the age of 18

• Have been referred or self-referred to NHS-funded secondary mental health services or Improving Access to Psychological Therapies (IAPT) services between 23/03/2019 to 22/03/2020.

• Registered at one of 20 GP practices identified within North East and North Cumbria. The 20 practices identified for the study fall within the 10% most deprived GP practices in England.

• Data requested will be limited to the periods 2019/20 – 2021/22 in order to analyse data covering pandemic and lockdown periods.

An estimated 5,390 patients will be included in this cohort.

University of Newcastle Upon Tyne is the research sponsor and the controller as the organisation responsible for ensuring that the Data will only be processed for the purpose described above.

The lawful basis for processing personal data under the UK GDPR is:

Article 6(1)(e): processing is necessary for the performance of a task in the public interest or in the exercise of official authority vested in the controller.

The lawful basis for processing special category data under the UK GDPR is:

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.

This processing is in the public interest because it adheres to the UK Policy Framework for Health and Social Care Research, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

The results of this study will provide information about potential disparities for those referred to mental health services within the most deprived areas & help to highlight the needs of the patient to be met by the care provided in order to improve the health outcomes and reduce these inequalities. University of Newcastle Upon Tyne is a public authority carrying out a research project.

Creation of the cohort & extraction of the data will be conducted by NHS England only, including NHS England's Data Services for Commissioners Regional Office (DSCRO). Identification of the cohort and extraction of the data will be conducted under NHS England's powers for dissemination under Section 261 of the Health and Social Care Act 2012.

The funding is provided by the National Institute for Health Research (NIHR). The funding is specifically for the study described. Funding remains in place for the duration of this study.

A Public and Patient Involvement (PPI) and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above. The group provided guidance to the study to maximise its relevance and impact. The group consists of mental health service users and professionals. Group members consist of a diverse range of individuals of varying age, gender, and ethnicity. Members of the group were recruited from the Clinical Research Network, the Deep End network for the North East and North Cumbria and the Harrogate District Service User and Carer Involvement Group. The reference group was consulted on aspects to ensure that analyses and dissemination are relevant to the needs of stakeholders.

Group members were consulted, revealing dissatisfaction with current primary care mental health support. Clinicians expressed discomfort with available options, citing long waiting lists for Talking Therapies services (9-18 months) and concerns about the adequacy of therapies for complex patient histories. The consensus from patients, professionals, and support organisations supports the necessity of this study, with their active involvement in shaping the study design. Collaboration with two well-connected members linked to local service users' groups through the PPI group led to significant enhancements in study design, plain summaries, and components in the routine data analysis work package. The group agreed with the benefits outlined by the proposed study processing and agreed that the use of data would support this. A study summary has been shared widely through the groups connections, including the Harrogate District Service User and Carer Involvement Group.

The study will actively engage with the PPI group across the entire analysis cycle to facilitate the creation of easily comprehensible and widely accessible findings. Regular meetings are scheduled every three months to facilitate co-production, encompassing a thorough review of context/ethics, troubleshooting, interpretation of outcomes, decision-making, as well as planning and executing implementation/dissemination activities. Additionally, researchers have plans to sustain a long-term working relationship with PPI members, extending into the development of subsequent funding bids.

No cohort data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA). NHS England's DSCRO will create a cohort of individuals using the data minimisation parameters set out by University of Newcastle Upon Tyne, which include:

• Adults over the age of 18

• Have been referred or self-referred to NHS-funded secondary mental health services or Improving Access to Psychological Therapies (IAPT) services between 23/03/2019 to 22/03/2020.

• Registered at one of 20 GP practices identified within North East and North Cumbria. The 20 practices identified for the study fall within the 10% most deprived GP practices in England.

• Data requested will be limited to the periods 2019/20 – 2021/22 in order to analyse data covering pandemic and lockdown periods.

NHS England's DSCRO will create a cohort of individuals using Personal Demographic Service (PDS) data and, securely transfer the relevant cohort identifiers to NHS England's Data Provisioning Team for linkage to and extraction of relevant pseudonymised data from the datasets mentioned within this DSA. No PDS data will be accessible by University of Newcastle Upon Tyne. Data will be pseudonymised before being disseminated to University of Newcastle Upon Tyne. No cohort identifiers will be accessed by University of Newcastle Upon Tyne.

NHS England will provide the relevant records from the datasets to the University of Newcastle Upon Tyne. The Data will contain no direct identifying data items.

The Data will be stored on servers at University of Newcastle Upon Tyne.

The Data will be accessed by authorised personnel via remote access.

The Controller must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

Remote processing will be from secure locations within England. The data will not leave England at any time.

Access to the pseudonymised Data will be restricted to employees or agents of University of Newcastle Upon Tyne who have authorisation from the Chief Investigator.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality.

There will be no requirement and no attempt to reidentify individuals when using the pseudonymised Data.

Researchers from University of Newcastle Upon Tyne will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

• A report of findings to NIHR funders (October 2024)

• Submissions to peer reviewed journals:

o Journal paper on the impact of the pandemic on NHS primary and secondary care services (mid-2024), potential target journal: the British Medical Journal.

o Journal paper on the impact of the pandemic on health outcome (late 2024), potential target journal: Value of Health

• Presentations at appropriate conferences. Target conferences include:

o NIHR Applied Research Collaborations (ARCs) Inequalities and Prevention National Symposium

o The Royal College of GPs conference

o European Conference on Mental Health

o International Health Economics Association Conference

The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.

The outputs will be communicated to relevant recipients through the following dissemination channels:

• Journals

• Public reports

• Reports aimed at community members, practitioners and commissioners

The research outputs will be shared with communities members, practitioners and commissioners across the country. Findings and events will be shared via the NIHR Three Schools and NIHR Applied Research Collaboration (ARC) websites.

An impact strategy has been developed to influence policy and practice and has been designed to ensure robust translation and communication plans. The impact strategy proposed will use the research team’s existing networks which encompass health, the voluntary sector, local and national government. Specifically, these networks comprise: FUSE (UK CRC Centre for Translational Research in Public Health) a body with considerable expertise in knowledge translation including a knowledge exchange broker and a communications group to assist with the dissemination and pathways to impact of research; NIHR School for Public Health Research; NIHR School for Primary Care Research; NIHR ARC Mental Health Special Interest Group (mSIG); Public Health England; NHS England, NHS Clinical Commissioners; and Local Government Association Community Wellbeing Network.

The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision-makers such as doctors, and patients to inform best practice to improve the care, treatment and experience of health care users relevant to the subject matter of the study.

The use of the data could:

• help the system to better understand the health and care needs of populations.

• advance understanding of regional and national trends in health and social care needs.

• advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions focused around mental health.

• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

• inform decisions on how to effectively allocate and evaluate funding according to health needs.

Benefits for those living with mental health problems:

It is likely that the pandemic will be responsible for both short and longer-term increased demand for mental health services. This study will involve acknowledging the linkages and dependencies between different levels in the NHS mental healthcare pathway. This will identify where problems might be occurring and what well-managed flow that is more likely to reduce the risk of people reaching severe or crisis mental health symptoms before they can access appropriate help, as well as reducing the number of people needing inpatient admission.

Causal inference methods will be used to investigate the impact of pathways on subsequent outcomes (such as health/wellbeing & cost). This study will also provide practice recommendations on how an appropriate service should be provided in a timely manner and what would be a minimum acceptable service for times of emergency or lockdown. Stakeholders could use the recommendations to plan prospectively to react quickly and meet the needs of patients.

Benefits for underserved communities:

This study focuses on people living in areas of high deprivation to understand their complex needs and identify barriers to provision for underserved groups. Participants are often affected by the wider determinants of health, such as ethnicity, Indices of Multiple Deprivation (IMD), unemployment, and housing. This study will explore segmented patient data in relation to social and demographic elements that can affect patient vulnerability and barriers to access. National longitudinal data (i.e. Understanding Society) will be used to map out some of the main dimensions of life events and social circumstances, such as reduction in social network or support, issues with finances or employment, likely to become more common in response to COVID-19. An image of nuanced needs and demands in different contexts combined with local knowledge will be an important part of a more meaningful and bespoke service planning ensuring that demand is met in an adequate and timely fashion in underserved communities.

It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.

Stakeholders will need to take action based on the information provided to them in order to realise the potential improvement opportunities. For example, stakeholders will be able to use the knowledge the research will provide to adjust their strategies to health care delivery to ensure any increasing inequalities are addressed.

Yielded Benefits is not a requirement for new applications.