How much geographical variation in access to Ovarian Cancer treatment is there in England and to what extent is this affected by health care system level factors? (ODR1718_153)

Cancer Research UK (CRUK) requires continued access to National Disease Registration Service (NDRS) National Cancer Registration and Analysis Service (NCRAS) data for the purposes of the following project:

‘How much geographical variation in access to Ovarian Cancer treatment is there in England and to what extent is this affected by health care system level factors?’

The data being retained was previously supplied by Public Health England (PHE) prior to its dissolution in October 2021. The management of the NDRS migrated to NHS Digital, which has since merged into NHS England.

The following is a summary of the aims of the project:

Develop a better understanding of the extent and causes of geographic variation in access to ovarian cancer treatments by:

1. Comparing the treatment access rates between Cancer Alliances and Trusts

2. Determining the extent to which this can be explained by regional differences in patient demographics, such as age and socio-economic status

3. Investigating the influence of healthcare system levels factors on access to treatment, such as provider and type, and consultant volume and specialisation.

The following NDRS data will be retained and processed:

• NDRS Cancer Registration- including Cancer Outcomes and Services Dataset (COSD) items

• NDRS Linked Hospital Episode Statistics (HES) Admitted Patient Care (APC)

• NDRS Systemic Anti-Cancer Therapy (SACT)

The level of the data is Pseudonymised.

The data has been minimised as follows:

• Limited to a study cohort identified as having met the following criteria: Females diagnosed with ovarian cancer (as defined by specific ICD codes) between 01/01/2015 and 31/12/2016.

CRUK is the controller and is 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 General Data Protection Regulation (GDPR) is:

Article 6(1)(f) - processing is necessary for the purposes of the legitimate interests pursued by the controller or by a third party. As a cancer research charity, CRUK need data to a certain degree of detail in order to carry out it's data analysis. As part of CRUK's work, Cancer Intelligence (a team within Cancer Research UK, are responsible for providing statistical analyses for the charity)

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.

AIMES Management Service provides IT hosting services to CRUK and will store the data as contracted by CRUK.

No data will flow to NHS England for the purposes of this Agreement.

The above-listed datasets will be retained and processed to support the project's aims.

The data will be stored on AIMES servers supporting the Cancer Research Secure Data Environment.

The data will be accessed onsite at the premises of CRUK, and where necessary via remote access. Where remote access is in use, the data will always remain on the servers at CRUK.

The data will not leave or be accessed outside of England at any time.

Access is restricted to employees or agents of CRUK who have authorisation from the Project Lead.

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 data.

Analysts from the CRUK have analysed the data for the purposes described above and may access data over the course of 2023/24 to check on analysis that is within a proposed article/paper.

The expected outputs of the processing may be:

• A report of findings to be published on the CRUK websites

• Submissions to peer-reviewed journals

• Presentations at appropriate conferences

The outputs will not contain NDRS data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.

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

• Journals

• Social media

• Public reports

• Posters displayed at appropriate conferences

• Public promotion of the findings at appropriate conference

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

This work aims to help further understand geographic variation in access to treatment for ovarian cancer. The identification of patient and healthcare factors that are associated with poor access to treatment could feed into the development of strategies to reduce variation.

The methodologies developed as part of this project are hoped to be of benefit to researchers interested in conducting similar analyses, investigating outcomes and access to treatment across the treatment pathway for different cancer types. Overall this could improve the reliability of research generated in this area.

It is hoped that through the publication of findings in appropriate media, the findings of this service evaluation 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.

To optimise the potential public benefits the findings of this work will be advertised to a wide audience via the CRUK webpages and other relevant channels.

As the results have not yet been published, and the study team are in the process of submitting papers. Benefits so far are confined to furthering the understanding of potential variation in treatment for ovarian cancer within CRUK. In addition, the COVID pandemic and the resulting changes in personnel and capacity across the team have unfortunately delayed the publication of the work.