Delivering integrated care systems and patient choice for specialist cancer treatments in the NHS: impact on access, equity and outcomes of care

London School of Hygiene and Tropical Medicine (LSHTM) requires access to NHS England data for the purpose of the following research project:

Delivering integrated care systems and patient choice for specialist cancer treatments in the NHS: impact on access, equity and outcomes of care

The following is a summary of the aims of the research project provided by the London School of Hygiene and Tropical Medicine:

The NHS is centralising cancer services to fewer centres, either by closing smaller specialist cancer units or limiting the types of treatments they offer to improve patient outcomes and use limited resources more effectively. It is expected that networking between referring hospitals and specialist cancer centres will guarantee access to all evidence-based treatments. However, these models of care delivery have been associated with difficulties in access to treatment for cancer patients, which has had a worsening effect on their health outcomes. In addition, variation in the quality of treatment persists across specialist NHS cancer centres. The NHS also continues to support patients to have a choice of treating hospital. Through their choices, it is expected that patients will shape the service to improve their experience and reduce waiting lists. This is important given the findings from previous research which demonstrated that up to one in three prostate cancer patients travel beyond their nearest surgical or radiotherapy centre for treatment, especially younger, healthier and more affluent patients. This movement of patients had unintended consequences on the number of cancer centres performing surgery and the use of high-cost technologies, with no evidence this has improved the quality of care.

The main aim of this project is to work out how specialist cancer treatment services can be integrated or centralised in a way that reduces the burden of travel for the sickest, elderly and most socially deprived patient groups but at the same time improves the quality and effectiveness of service delivery given workforce constraints (such as access to limited numbers highly specialised surgeons or the availability of new treatments like Proton Beam Therapy, a type of radiotherapy).

Service design also needs to make sure patients have an appropriate choice of treating hospital and are allowed to shape the service to improve their overall experience, without impacting on the equity (fairness) and efficiency of the health service through their mobility. This is a complex issue and needs to start by understanding the factors influencing differences in access, type of treatment, and outcomes of specialist cancer care.

LSHTM will use this data to look at the following:

· investigate the patient and hospital factors that influence where patients with different cancer types receive their treatment (patient mobility). This includes the use of specialist services (such as robotic surgery, stereotactic radiotherapy) and measures of hospital and treatment quality (such as waiting times, short and long term toxicity, recurrence rates, readmission rates, survival, and patient experience)

· understand what patient mobility means for patterns of hospital service use and patient-level outcomes

· look at the impact of the organisation of cancer services in England on access to specialist cancer treatments, type of treatment and outcomes and the factors related to this

· model what impact different configurations (closures or reallocation) of specialist cancer treatment services would have on travel burden, equity in access to services and patient outcomes to inform service design

· consider changes in the delivery of cancer care services, particularly patient mobility and consolidation of specialist cancer treatment services during the COVID-19 pandemic

The project will be comprised of four work packages to address the following objectives:

1. To investigate whether patients with different cancers bypass their nearest specialist treatment services, and to understand the patient and service characteristics associated with this mobility.

2. To understand what patient mobility means for patterns of hospital service utilisation.

3. To investigate the impact of hub-and-spoke centralisation of cancer services in England on access to specialist cancer treatments and outcomes.

4. To model what impact different configurations (closures or reallocation) of specialist cancer treatment services would have on travel burden, equity in access to services and patient outcomes to inform service design.

The following NHS England Data will be accessed:

> NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC), Outpatients (OP) and Accident & Emergency (A&E) - necessary because they provide information on treatments and provider characteristics to enable comparison.

> NDRS Cancer Registration – necessary because to identify the cohort of patients to which this dataset pertains, fields included in this dataset capture mortality data this data is necessary because it provides information on patient outcomes necessary for the mobility and outcome work.

> Cancer Waiting Times (CWT) - necessary to map treatment pathways including treatments after a cancer diagnosis. CWT data will be used a performance measure.

> The National Cancer Patient Experience Survey (CPES) - necessary because it provides information on experience of care at individual hospitals and services and with it the potential reasons why patients select particular hospitals for treatment.

> Radiotherapy Data Set (RTDS) and Systemic Anti-Cancer Therapy (SACT) data set to identify patients receiving these modalities, and to categorise them according to type, intent and duration of regimen.

The level of the Data will be:

> Pseudonymised

The Data will be minimised as follows:

> Limited to a study cohort identified by NHS England as meeting the following criteria: all breast, bowel, prostate and oesophageal cancer patients, newly diagnosed between 2013 to 2022 in England (approximately 1.2 million patients). These cancers have been chosen as they present different challenges in defining how best to organise services as they vary in their presentation and treatments. 40 men and women treated for these cancers in the English NHS will be interviewed as part of the study.

> HES data is minimised to all episodes of care 12 months before to 36 months after diagnosis in the initial cohort defined above. HES data is requested 12 months before diagnosis to calculate comorbidity scores and understand history of investigations and interventions prior to diagnosis.

> RTDS/SACT data is minimised to all episodes of care within 30 days before to 36 months after diagnosis in the initial cohort defined above.

LSHTM 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 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 the routinely collected data is to be used to support improvements in the quality and equality of access of NHS cancer services.

The funding is provided by the National Institute for Health and Care Research (NIHR). The funding is specifically for the project described.

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

Public and Patient Involvement (PPI) has informed the scope, objectives and design of the study. Patients expressed concerns around the continued lack of transparent information on why NHS cancer services are continually changing; expecting some patients to travel further for care with no clear evidence of quality improvement. Following their recommendations, four cancer types will be investigated, and interviews undertaken with patients diagnosed with these cancers. The written proposal has been reviewed by four PPI groups and feedback regarding the lay summary, methods and dissemination strategy incorporated. A six-person PPI Advisory Panel will feed into the work packages, guide the dissemination strategy, and co-design planned engagement activity.

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

NHS England will provide the relevant records from the HES, Cancer Registry, SACT, CWT, CPES, RTDS to LSHTM. The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other record level data already held by the recipient.

The Data will not be transferred to any other location.

The Data will be stored on servers at LSHTM.

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

The Controller(s) 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 is restricted to employees or agents of LSHTM who have authorisation from the Principal Investigator.

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

The data will not be linked with any other data than that requested.

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

Researchers from LSHTM will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

> Clinical and health policy related peer reviewed journals

> Presenting at cancer specific, health services research and policy focused conferences

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

> Policy briefings

> National and international clinical/health policy related conferences

Outputs are expected to be produced throughout late 2024 – mid 2026.

This study is expected to provide high quality evidence to inform how the NHS can improve the delivery of specialist cancer treatment services (particularly surgery and radiotherapy). From the patients’ perspectives, understanding how different patient groups respond to the current service and treatments on offer will inform service re-design to reduce inequalities and improve outcomes.

From the hospitals’ perspective, this study will provide an understanding of how current networked models of cancer care delivery between referring and specialist centres impact on access to specialist treatments and outcomes. It will support health care planners to investigate the service and audit the impact of potential changes in the configuration of cancer (or non-cancer) specialist services on access and patient outcomes.

From the health policy makers’ perspective, it is important that further integration or centralisation of services is based on evidence that alternative centres provide either better care or improved access, particularly for vulnerable groups. This research will inform commissioners, Clinical Commissioning Groups and cancer alliance boards of the current use of cancer services and identify gaps in access. By advising policymakers how to reconfigure cancer services for breast, bowel, prostate and oesophageal cancer types, this research is expected to have a significant impact for individuals with these cancers.

The use of the data could:

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

> lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.

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

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

Research publications and policy briefings to hospitals and NHS Cancer Alliances will be used to disseminate the research findings. Engagement with NHS policymakers, clinicians, charitable and academic communities will take place through the Steering Committee and planned policy workshops. A debate will be organised to engage with the public regarding the implications of NHS hospital closures, guided by my findings.

Through this NIHR funded project, LSHTM have:

1. Developed centralisation models for organising NHS cancer services which are being adopted by NHS England and have been presented at the WHO and the IAEA and have informed cancer control policy.

2. Modelling work has provided analysis to support management of the cancer backlog in the NHS by identifying spare capacity.

3. Modelling work has identified at risk regions and populations where worse access to treatment (measured by travel times) is observed and where direct recommendations for building NHS capacity is recommended.

4. Analysis has identified how different models of service design of treatment services directly impacts on patient outcomes.

5. The outputs have directly involved patients in the co-development of the question, analysis and writing.