Specialist surgical care systems (EPI-SPEC-SURG) and their relevance to patient outcome and experience: learning from an improvement study in the care of chronic subdural haematoma (IMPROVE-CSDH)

Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge requires access to NHS England data for the purpose of the following research project:

Specialist surgical care systems (EPI-SPEC-SURG) and their relevance to patient outcome and experience: learning from an improvement study in the care of chronic subdural haematoma (IMPROVE-CSDH).

The following is a summary of the aims of the research project provided by University of Cambridge:

The objectives of processing the data are to:

1. Understand the epidemiology of access to specialist surgical services including how access relates to baseline drivers of health inequality (e.g. socioeconomic strata)

2. Identify specific surgical pathways/conditions at particular risk of delay/strain based on need, service delay, and rates of 'split' admission between providers (indicating diagnosis in one hospital and treatment in another)

3. Examine the geographic disparity of access/strain across the country.

The following NHS England Data will be accessed:

• Emergency Care Data Set (ECDS) - this is needed to identify individuals diagnosed with a condition requiring surgery (such as a brain haemorrhage) in one hospital prior to their transfer to an operating centre.

• Hospital Episode Statistics

o Admitted Patient Care

o Accident & Emergency

The HES datasets are necessary to identify diagnosing and treating centres for those requiring specialist surgery and where they are within the country.

The level of the Data will be pseudonymised.

The Data will be minimised by NHS England as follows:

• Limited to data between 2013/14 to 2024/25

Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge are the research sponsors and the controllers 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 carried out 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 of the need to ensure the public are provided healthcare services for specialist surgery that are comprehensive, efficient, and promote equality. The project looks to identify whether certain procedures or geographic areas are subject to specific stresses (that could result in the public receiving unequal care) and develop a roadmap to improving this.

The funding is provided by National Institute for Health and Care Research (NIHR). The funding is specifically for the study/ described. Funding is in place until 1st December 2029.

The funder will have no ability to suppress or otherwise limit the publication of findings.

Data will be accessed by:

• A PhD student enrolled with University of Cambridge. The individual has completed mandatory data protection and confidentiality training and is subject to University of Cambridge’s policies on data protection and confidentiality. The individual accessing the data will do so under the supervision of a substantive employee of University of Cambridge. University of Cambridge would be responsible and liable for any work carried out by the individual. The PhD student would only work on the data for the purposes described in this Data Sharing Agreement (DSA).

This project builds on significant work with patients and the public to understand and improve specialist surgical services.

1) A patient and stakeholder workshop in 2023 examining pathways for care of patients with comorbidities requiring surgery as well as the use of de-identified healthcare data to improve such services.

2) Ongoing patient and public involvement in the improvement of care for chronic subdural haematoma, with a PPIE panel formed to support other initiatives looking at improving and understanding cross site care.

3) The protocol for EPI-SPEC-SURG/IMPROVE-CSDH was reviewed by the data access PPI panel at CUH in early 2025

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England will grant access to the Data via the Secure Data Environment (SDE). The SDE is a secure data and research analysis platform. It allows approved researchers with approved projects access to pseudonymised data and industry-leading analytics tools.

SDE users can request exportation of aggregated analysis results (suppressed and summarised according to the NHSE SDE Disclosure Control rules) subject to review and approval by the NHS England SDE Output Checking team. The SDE Output Checking team will ensure that no output contains information which could be used either on its own or in conjunction with other data to breach an individual's privacy.

Users must identify themselves via a multi-factor authentication mechanism and are only able to access the datasets detailed within this DSA. The access and use of the system is fully auditable, and all users must comply with the use of the Data as specified in this DSA.

Users are only authorised to access the Data specified in this DSA and can utilise a variety of analytical tools available within the SDE platform. Users are not permitted to export record-level data from the SDE.

The Data will be stored on servers at NHS England. Only aggregate data will be exported for analysis and then stored via download to the University of Cambridge Secure Research Computing Platform (SRCP).

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

The Controllers 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/Wales. The data will not leave England/Wales at any time.

Access will be restricted to individuals who are either employees or students of the Data Controllers, and have a signed User Agreement in place with NHS England.

No other organisation is permitted to access the Data.

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

The Data will be minimised by the University of Cambridge as follows:

• Limited to patients above the age of 18

• Limited only to patients who appear in HES APC

• Limited to conditions relevant to the study identified by specific ICD or OPCS codes;

o Does not include OPCS codes

o U01-U54 (diagnostic imaging as sole procedure)

o X01-X98 (Miscellaneous operations) with the exception of X12.1 which would be included

The aggregated information derived from the Data will be combined with aggregated data from public sources.

Aggregate data may be linked to publicly available data of relevance to the geographical area of interest (e.g. Middle Super Output Area [MSOA]) such as ONS held information on socioeconomic factors/urban/rural makeup of each MSOA.

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

Analysts from Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

• Submissions to peer reviewed journals by the study end,

• Presentations at national conferences (e.g. Anaesthesia Research),

• PhD student thesis (which would have a planned submission of late 2028-early 2029),

• Geographic maps for planning of services,

• Analytical code/methods to visualise other specialist care networks (e.g. medical admissions).

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

• Briefing documents provided to PPI

• To workshop participants as part of later project stages

• Mentorship team of the CI as part of their fellowship (including representatives from the Royal College of Anaesthetists, NHS England, and the national body representing UK Neurosurgeons)

The target date for the outputs is approximately December 2028.

The findings of this research study will benefit the public by enabling:

1. National data on need for and access to specialist surgical procedures including journey times, discrepancy in access based on drivers of inequality, and geographical variation. This will permit effective health services planning

2. A 'shortlist' of at-risk pathways facing similar split admission rates and strain to those seen in care for chronic subdural haematoma, these pathways will be then intensively mapped in multidisciplinary workshops to understand strategies to mitigate harm or improve care.

The findings of this research study will benefit patients by enabling:

1) At the conclusion of the overall project we will have a road-map to understanding which surgical pathways may need improving, where in the country this is, and how this might be achieved

2) The hope would be that dissemination of these findings can support mid-term re-organisation to improve safety of services

It is hoped that through publication of findings in appropriate media, the findings of this research will show:

1. First national data on the needs of those requiring specialist surgery and how service structure could yield to inequalities in access/care this will be crucial in planning of specialist surgical services as populations change/age.

2. Models of patient flow through a distributed care network that could be applied to other, non-surgical disciplines.

Results will be disseminated rapidly to stakeholders and patients involved in the workshop phase of EPI-SPEC-SURG/IMPROVE-CSDH. Participants at these workshops will be identified via partnership with charities in the areas our analysis identify as high risk. Mentorship team for the CI as part of their advanced fellowship includes representatives from major national bodies including the Royal College of Anaesthetists and NHS England – creating a route for rapid dissemination of these findings to those involved in medical care and policy making.

Not stated in the register.