Inequalities in Cancer Survival (ODR_1516_050)

The London School of Hygiene and Tropical Medicine (LSHTM) requires continued access to NHS England National Disease Registration Service (NDRS) data for the purpose of the following research project:

Inequalities in cancer care and cancer outcomes: the role of patient, tumour, clinical and healthcare system factors in primary and secondary care sectors.

Access to the required data was previously provided by the Public Health England (PHE) Office for Data Release (ODR) under the reference ODR1516_050. Following the dissolution of PHE in October 2021, the function of governing access to NDRS data transferred to NHS Digital, NHS Digital has since merged into NHS England.

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

The study aims to study why and how inequalities in cancer survival (e.g. between geographies, age groups, or socioeconomic levels) arise and persist in England, by studying how survival is affected by characteristics of the patient (including awareness, co-morbidity), the tumour (including the stage at diagnosis), the management and care of the patients (including the primary and secondary care pathways) and the healthcare system factors (including the characteristics of the hospital or surgeons).

To explain these observed inequalities and the mechanisms leading to these inequalities, the study needs to disentangle the respective roles of the patient, tumour, clinical and healthcare system factors along the journey experienced by the patients from their first symptoms to their diagnosis, treatment and eventually death (from any cause).

Research questions the study has planned to investigate include (but are not limited to):

•Does late diagnosis lead to differential management and a higher risk of emergency presentation?

•Are the prevalence and severity of comorbid conditions associated with the quality of cancer care?

•Do the referral pathway and other factors impact the diagnostic investigation, the decision to treat and the type of treatment received?

•Do healthcare system factors affect cancer outcomes?

•What are the barriers and factors that patients and healthcare professionals consider fundamental for making clinical decisions?

•What factors affect patient-reported outcomes and which characteristics of their experience affect cancer outcomes?

•Can differential long-term survival be due to late recurrence or late adverse effects?

While the above list is not an exhaustive list of all research questions the study plans to address, all research questions are limited to lines of enquiry that will allow the study to better understand how and why inequalities in cancer survival arise and persist.

The following datasets will be accessed:

•NDRS Cancer Registry

•NDRS Linked Cancer Waiting Times (treatments only)

•NDRS Linked Diagnostic Imaging Dataset (DIDS)

•Hospital Episode Statistics (HES) Accident and Emergency (A&E)

•HES Admitted Patient Care (APC)

•HES Outpatient (OP)

•NDRS National Lung Cancer Data Audit (NLCA)

•NDRS National Lung Cancer Audit (LUCADA)

•NDRS National Cancer Patient Experience Survey (CPES)

•NDRS National Radiotherapy Dataset (RTDS)

•NDRS Quality of Life of Cancer Survivors

•NDRS Quality of Life of Colorectal Cancer Survivors

•NDRS Systemic Anti-Cancer Therapy (SACT) Datasets

• NDRS National Lung Cancer Audit (NLCA): In order to follow on from the data years covered by LUCADA, as the LUCADA dataset only collects data up until 2014

• NDRS Cancer Pathway: This dataset combines and summarises other NDRS datasets that describe specific aspects of the patient pathway from diagnosis to treatment and on to the follow-up

• Cancer Outcomes and Services Data (COSD):

Although we did not have access to COSD fields in the past, we had access to identical information through the various cancer audit datasets. Since the cancer audit datasets have not been updated for a while, we would like to access a certain number of variables in COSD which were available in these audit datasets.

The level of data is pseudonymised, and the data has and will continue to be minimised as follows:

•Limited to individuals with invasive malignant cancers.

•Limited to data between 1995 and most up-to-date calendar year, the minimum amount required to achieve the aims outlined within this Agreement

•Limited to the following geographic areas: England

•Limited to the least granular data possible (i.e. full dates of birth are not held)

LSHTM is the controller who determines the purpose and means of processing, and the organisation responsible for ensuring that the data will only be processed for the purposes described above. LSHTM is the only processor, and will only process data as outlined 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.

The funding for this project comes from multiple sources, including but not limited to:

The funding comes from multiple sources. Current funders include:

•Cancer Research UK (CRUK)

•Medical Research Council (MRC)

•National Institute for Health and Care Research (NIHR)

•Pancreatic Cancer Research Fund (PCRF)

Funding for the work is ongoing and will continue for the foreseeable future.

The study undertakes various Public and Patient Involvement and Engagement (PPIE) activities. The project team works with patients whose lives have been affected by cancer, these individuals may serve as co-investigators, collaborators or lay members of project advisory groups. The project team have a long association with the National Cancer Research Institute (NCRI) Consumer Forum, which runs ‘Dragon’s Den’ Sessions where patients can provide input and feedback on research proposals.

The expected outputs of the processing will be:

•Submissions to peer-reviewed journals, submissions will be regular and ongoing due to the broad scope of the project. The project will submit to reputable journals including the British Journal of Cancer, the Lancet and Oncology.

•Presentations at wide variety of conferences, including the World Cancer Congress, World Congress of Epidemiological and other relevant events relating to cancer, epidemiology and health statistics.

•Tools containing aggregated data.

The outputs will not contain NHS England data. They 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

•Social media- Twitter (@icon_lshtm)

•Co-hosted events with the likes of the NIHR- next event scheduled for July 2023

•Public events with patients and stakeholders

•Press/media engagement

•Public promotion of the research on the project's web pages and other relevant blogs. Infographics are regularly produced to ensure research findings are accessible to all audiences.

•Reports aimed at patients

Outputs will continue to be produced on a regular and ongoing basis.

The project has continued to benefit the provision of health and social care since it began.

Due to the wide-ranging nature of the project, there are many yielded benefits, a selection of examples is provided on the project's webpages.

To date, the project team have demonstrated that inequalities in cancer care (e.g. diagnostic tests, optimal treatments) and cancer outcomes (e.g. survival) by deprivation, age, or gender were only partially explained by differential patient factors such as poor use of primary care services, comorbid conditions, cancer awareness. These findings suggest the impact of barriers within the healthcare system.

With a better understanding of the factors that lead to differences in cancer outcomes (for example how long someone survives after their cancer diagnosis), this research informs, develops and provides evidence for proposals and policies. These plans make sure cancer services are developed to allow all patients to benefit from improvements in cancer care, decreasing the differences currently happening in England.

The London School of Hygiene and Tropical Medicine (LSHTM) requires continued access to NHS England National Disease Registration Service (NDRS) data for the purpose of the following research project:

Inequalities in cancer care and cancer outcomes: the role of patient, tumour, clinical and healthcare system factors in primary and secondary care sectors.

Access to the required data was previously provided by the Public Health England (PHE) Office for Data Release (ODR) under the reference ODR1516_050. Following the dissolution of PHE in October 2021, the function of governing access to NDRS data transferred to NHS Digital, NHS Digital has since merged into NHS England.

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

The study aims to study why and how inequalities in cancer survival (e.g. between geographies, age groups, or socioeconomic levels) arise and persist in England, by studying how survival is affected by characteristics of the patient (including awareness, co-morbidity), the tumour (including the stage at diagnosis), the management and care of the patients (including the primary and secondary care pathways) and the healthcare system factors (including the characteristics of the hospital or surgeons).

To explain these observed inequalities and the mechanisms leading to these inequalities, the study needs to disentangle the respective roles of the patient, tumour, clinical and healthcare system factors along the journey experienced by the patients from their first symptoms to their diagnosis, treatment and eventually death (from any cause).

Research questions the study has planned to investigate include (but are not limited to):

•Does late diagnosis lead to differential management and a higher risk of emergency presentation?

•Are the prevalence and severity of comorbid conditions associated with the quality of cancer care?

•Do the referral pathway and other factors impact the diagnostic investigation, the decision to treat and the type of treatment received?

•Do healthcare system factors affect cancer outcomes?

•What are the barriers and factors that patients and healthcare professionals consider fundamental for making clinical decisions?

•What factors affect patient-reported outcomes and which characteristics of their experience affect cancer outcomes?

•Can differential long-term survival be due to late recurrence or late adverse effects?

While the above list is not an exhaustive list of all research questions the study plans to address, all research questions are limited to lines of enquiry that will allow the study to better understand how and why inequalities in cancer survival arise and persist.

The following datasets will be accessed:

•NDRS Cancer Registry

•NDRS Linked Cancer Waiting Times (treatments only)

•NDRS Linked Diagnostic Imaging Dataset (DIDS)

•NDRS Linked Hospital Episode Statistics (HES) Accident and Emergency (A&E)

•NDRS Linked HES Admitted Patient Care (APC)

•NDRS Linked HES Outpatient (OP)

•NDRS National Lung Cancer Data Audit (NLCA)

•NDRS National Lung Cancer Audit (LUCADA)

•NDRS National Cancer Patient Experience Survey (CPES)

•NDRS National Radiotherapy Dataset (RTDS)

•NDRS Quality of Life of Cancer Survivors

•NDRS Quality of Life of Colorectal Cancer Survivors

•NDRS Systemic Anti-Cancer Therapy (SACT) Datasets

• NDRS National Lung Cancer Audit (NLCA): In order to follow on from the data years covered by LUCADA, as the LUCADA dataset only collects data up until 2014

• NDRS Cancer Pathway: This dataset combines and summarises other NDRS datasets that describe specific aspects of the patient pathway from diagnosis to treatment and on to the follow-up

• Cancer Outcomes and Services Data (COSD):

Although we did not have access to COSD fields in the past, we had access to identical information through the various cancer audit datasets. Since the cancer audit datasets have not been updated for a while, we would like to access a certain number of variables in COSD which were available in these audit datasets.

The level of data is pseudonymised, and the data has and will continue to be minimised as follows:

•Limited to individuals with invasive malignant cancers.

•Limited to data between 1995-2018 (or most up-to-date calendar year), the minimum amount required to achieve the aims outlined within this Agreement

•Limited to the following geographic areas: England

•Limited to the least granular data possible (i.e. full dates of birth are not held)

LSHTM is the controller who determines the purpose and means of processing, and the organisation responsible for ensuring that the data will only be processed for the purposes described above. LSHTM is the only processor, and will only process data as outlined 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.

The funding for this project comes from multiple sources, including but not limited to:

The funding comes from multiple sources. Current funders include:

•Cancer Research UK (CRUK)

•Medical Research Council (MRC)

•National Institute for Health and Care Research (NIHR)

•Pancreatic Cancer Research Fund (PCRF)

Funding for the work is ongoing and will continue for the foreseeable future.

The study undertakes various Public and Patient Involvement and Engagement (PPIE) activities. The project team works with patients whose lives have been affected by cancer, these individuals may serve as co-investigators, collaborators or lay members of project advisory groups. The project team have a long association with the National Cancer Research Institute (NCRI) Consumer Forum, which runs ‘Dragon’s Den’ Sessions where patients can provide input and feedback on research proposals.

The expected outputs of the processing will be:

•Submissions to peer-reviewed journals, submissions will be regular and ongoing due to the broad scope of the project. The project will submit to reputable journals including the British Journal of Cancer, the Lancet and Oncology.

•Presentations at wide variety of conferences, including the World Cancer Congress, World Congress of Epidemiological and other relevant events relating to cancer, epidemiology and health statistics.

•Tools containing aggregated data.

The outputs will not contain NHS England data. They 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

•Social media- Twitter (@icon_lshtm)

•Co-hosted events with the likes of the NIHR- next event scheduled for July 2023

•Public events with patients and stakeholders

•Press/media engagement

•Public promotion of the research on the project's web pages and other relevant blogs. Infographics are regularly produced to ensure research findings are accessible to all audiences.

•Reports aimed at patients

Outputs will continue to be produced on a regular and ongoing basis.

The project has continued to benefit the provision of health and social care since it began.

Due to the wide-ranging nature of the project, there are many yielded benefits, a selection of examples is provided on the project's webpages.

To date, the project team have demonstrated that inequalities in cancer care (e.g. diagnostic tests, optimal treatments) and cancer outcomes (e.g. survival) by deprivation, age, or gender were only partially explained by differential patient factors such as poor use of primary care services, comorbid conditions, cancer awareness. These findings suggest the impact of barriers within the healthcare system.

With a better understanding of the factors that lead to differences in cancer outcomes (for example how long someone survives after their cancer diagnosis), this research informs, develops and provides evidence for proposals and policies. These plans make sure cancer services are developed to allow all patients to benefit from improvements in cancer care, decreasing the differences currently happening in England.

The London School of Hygiene and Tropical Medicine (LSHTM) requires continued access to NHS England National Disease Registration Service (NDRS) data for the purpose of the following research project:

Inequalities in cancer care and cancer outcomes: the role of patient, tumour, clinical and healthcare system factors in primary and secondary care sectors.

Access to the required data was previously provided by the Public Health England (PHE) Office for Data Release (ODR) under the reference ODR1516_050. Following the dissolution of PHE in October 2021, the function of governing access to NDRS data transferred to NHS Digital, NHS Digital has since merged into NHS England.

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

The study aims to study why and how inequalities in cancer survival (e.g. between geographies, age groups, or socioeconomic levels) arise and persist in England, by studying how survival is affected by characteristics of the patient (including awareness, co-morbidity), the tumour (including the stage at diagnosis), the management and care of the patients (including the primary and secondary care pathways) and the healthcare system factors (including the characteristics of the hospital or surgeons).

To explain these observed inequalities and the mechanisms leading to these inequalities, the study needs to disentangle the respective roles of the patient, tumour, clinical and healthcare system factors along the journey experienced by the patients from their first symptoms to their diagnosis, treatment and eventually death (from any cause).

Research questions the study has planned to investigate include (but are not limited to):

•Does late diagnosis lead to differential management and a higher risk of emergency presentation?

•Are the prevalence and severity of comorbid conditions associated with the quality of cancer care?

•Do the referral pathway and other factors impact the diagnostic investigation, the decision to treat and the type of treatment received?

•Do healthcare system factors affect cancer outcomes?

•What are the barriers and factors that patients and healthcare professionals consider fundamental for making clinical decisions?

•What factors affect patient-reported outcomes and which characteristics of their experience affect cancer outcomes?

•Can differential long-term survival be due to late recurrence or late adverse effects?

While the above list is not an exhaustive list of all research questions the study plans to address, all research questions are limited to lines of enquiry that will allow the study to better understand how and why inequalities in cancer survival arise and persist.

The following NHS England NDRS datasets have already been received and will continue to be accessed:

•NDRS Cancer Registry

•NDRS Linked Cancer Waiting Times (treatments only)

•NDRS Linked Diagnostic Imaging Dataset (DIDS)

•NDRS Linked Hospital Episode Statistics (HES) Accident and Emergency (A&E)

•NDRS Linked HES Admitted Patient Care (APC)

•NDRS Linked HES Outpatient (OP)

•NDRS National Lung Cancer Data Audit (NLCA)

•NDRS National Cancer Diagnosis Audit (NCDA)

•NDRS National Cancer Patient Experience Survey (CPES)

•NDRS National Radiotherapy Dataset (RTDS)

•NDRS Quality of Life of Cancer Survivors

•NDRS Quality of Life of Colorectal Cancer Survivors

•NDRS Systemic Anti-Cancer Therapy (SACT) Datasets

The level of data is pseudonymised, and the data has been minimised as follows:

•Limited to individuals with invasive malignant cancers.

•Limited to data between 1995-2018, the minimum amount required to achieve the aims outlined within this Agreement

•Limited to the following geographic areas: England

•Limited to the least granular data possible (i.e. full dates are not held)

LSHTM is the controller who determines the purpose and means of processing, and the organisation responsible for ensuring that the data will only be processed for the purposes described above. LSHTM is the only processor, and will only process data as outlined 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.

The funding for this project comes from multiple sources, including but not limited to:

The funding comes from multiple sources. Current funders include:

•Cancer Research UK (CRUK)

•Medical Research Council (MRC)

•National Institute for Health and Care Research (NIHR)

•Pancreatic Cancer Research Fund (PCRF)

Funding for the work is ongoing and will continue for the foreseeable future.

The study undertakes various Public and Patient Involvement and Engagement (PPIE) activities. The project team works with patients whose lives have been affected by cancer, these individuals may serve as co-investigators, collaborators or lay members of project advisory groups. The project team have a long association with the National Cancer Research Institute (NCRI) Consumer Forum, which runs ‘Dragon’s Den’ Sessions where patients can provide input and feedback on research proposals.

The expected outputs of the processing will be:

•Submissions to peer-reviewed journals, submissions will be regular and ongoing due to the broad scope of the project. The project will submit to reputable journals including the British Journal of Cancer, the Lancet and Oncology.

•Presentations at wide variety of conferences, including the World Cancer Congress, World Congress of Epidemiological and other relevant events relating to cancer, epidemiology and health statistics.

•Tools containing aggregated data.

The outputs will not contain NHS England data. They 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

•Social media- Twitter (@icon_lshtm)

•Co-hosted events with the likes of the NIHR- next event scheduled for July 2023

•Public events with patients and stakeholders

•Press/media engagement

•Public promotion of the research on the project's web pages and other relevant blogs. Infographics are regularly produced to ensure research findings are accessible to all audiences.

•Reports aimed at patients

Outputs will continue to be produced on a regular and ongoing basis.

The project has continued to benefit the provision of health and social care since it began.

Due to the wide-ranging nature of the project, there are many yielded benefits, a selection of examples is provided on the project's webpages.