Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region
University of Newcastle upon Tyne · Academic
In term In term in the September 2026 edition: the latest version runs to 29 September 2026.
- Reference
- DARS-NIC-726177-R0H8V
- Current version
- v2.2
- Term of current version
- 5 September 2025 to 29 September 2026
- Start date
- 29 September 2024
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 0
Why the data was released
Objective for processing
Newcastle University requires access to NHS England data for the purpose of the following research project:
Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region.
The following is a summary of the aims of the research project as provided by Newcastle University:
Head and neck cancer (HNC) includes cancers of the mouth, throat, and voice box. These cancers are common in people who smoke and drink excessive alcohol. They particularly affect people living in more deprived areas and the North, including North West England (NWE) and North Wales (NW). These differences are called inequalities.
In 2020, during the COVID-19 pandemic, 20% fewer HNC were diagnosed in North England. This drop was not seen in other areas. This may mean that inequalities in HNC are now even bigger than they were before the pandemic. Even before the pandemic, we didn’t really understand the extent of reasons for inequalities in HNC: researchers have not looked thoroughly at national and regional data since around 2014. Our research will do this by bringing together up-to-date information from national databases to help work out the size of the problem and how to reduce inequalities in HNC.
The specific research questions are as follows:
(1) Determine how early HNCs were when diagnosed and how they were treated, including whether where patients lived (both region and deprivation status of area or residence) affected this. The main analysis will look at England as a whole. Sub-group analyses will focus on the NWE and NW.
(2) Compare the numbers of deprived and affluent patients alive 1-year after HNC diagnosis (survival).
(3) Compare HNC diagnosis, treatment and survival with data from before and during the pandemic.
(4) Use advanced statistical methods (mediation models) to find out the reasons for inequalities in survival.
(5) Work with patients, charities, and health professionals to come up with suggestions for what needs to happen to reduced HNC inequalities.
For aims (1)-(3), the main analysis will include all of England. Sub-group analyses will be conducted for NWE and NW (this is a particular interest of the funder).
This research project will build on a background of previous work in HNC which has found inequalities and poorer survival in patients living in the most deprived areas of the UK. This is thought to be related to: i) late stage at diagnosis; ii) diagnosis as an emergency and; iii) delayed treatment receipt. It is also known that in other cancers, patients living in deprived areas do not always receive the most appropriate treatment, even after considering other factors which could influence this such as the number of other health conditions (comorbidities) they have.
Studies in HNC in Scotland have previously found different findings. For example, a study using Scottish audit data found that inequalities in HNC survival disappear when stage is accounted for. In comparison, a study using Scottish cancer registry and Head and Neck 5000 data did find survival differences by deprivation and income when stage was considered. Limitations with the methods used in these studies may explain these differences. It seems likely that the real situation is more complex i.e. instead of treating all potential factors on survival as having a direct influence, that instead, indirect effects are also considered. For example deprivation could influence treatment and then survival (indirect) as well having direct effects on survival too. New work using more up to date methods (e.g. using causal inference) is needed.
Previous work has also shown that living in a deprived community in the North is associated with worse health outcomes than living in a deprived community in London. Yet HNC outcomes by region have not been investigated since the early 2000s even though it is known that age-standardised incidence rates are highest in the North East and North West. Finally, Cancer Alliance data from during the pandemic suggests that HNC diagnoses fell by 20% in some parts of Northern England but not elsewhere. The impact of the pandemic on HNC outcomes still remains unknown.
This data request is for a standalone project which commenced start 2024 and has three phases:
1) Developing a database of HNC incidence and survival estimates.
2) Understanding how deprivation is related to survival (Mediation model analyses).
3) Development of recommendations for HNC policy, intervention development, and research.
The scope of the data use will be across all three phases of this research project.
The following NHS England Data will be accessed:
• NDRS Cancer Consolidated – used as the ‘spine’ dataset. It is necessary to determine who was diagnosed with pathologically-confirmed head and neck cancer in the population of interest during the time period of interest. We will obtain from this dataset demographic (e.g. sex, age, ethnicity, region) and clinical information (e.g. tumour grade, size, number of tumours, comorbidities (Charlson Comorbidity Index), route to diagnosis and treatments) on HNC. These data will enable examination of HNC incidence and survival, determining if inequalities are explained by variations observed by deprivation and region (or other confounding factors).
• Hospital Episode Statistics
o Admitted Patient Care – necessary to provide additional information on persons diagnosed with HNC including surgical procedures received and other conditions. These data will enable examination of variations in incidence and survival in HNC and whether factors such as comorbidities (considered individually and as total number) and surgical treatments received explain variations by deprivation and region. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
o Outpatients – necessary to provide additional information on persons diagnosed with HNC including clinical diagnoses, specialist service provision, and consultant details. These data will be used to determine if variations in incidence and survival in HNC are explained by patient comorbidities (individual and number of), specialism referred to and/or, consultant workload. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
The Data is required for the above aims because the information will provide details on: i) all HNC registrations in the time frame of interest and; ii) demographic and clinical variables of interest. Combined, this data enables analyses to be undertaken exploring associations in HNC diagnosis, treatment, and survival by both region and deprivation, allowing for control of important covariates.
The level of the Data will be:
• Pseudonymised
The Data in Cancer Consolidated Dataset will be minimised as follows and the output will be limited to include;
• The conditions relevant to the study identified by specific ICD-10 codes (C00, C01, C02, C03, C04, C05, C06, C07, C08, C09, C10, C11, C12, C13, C14, C30, C31, C32, and C76).
• The data between patients with a date of diagnosis from 01/01/2016 and to the latest date available at the time of data request. This will enable the analysis of HNC inequalities both pre- and during the pandemic.
Newcastle University is the sponsor and will be the sole Controller for the released dataset.
The Oracle Cancer Trust and North West Cancer Research are joint research funders. Neither the Oracle Cancer Trust and North West Cancer Research will carry out any data controllership or processing activities. Once the data has been processed, anonymised, aggregated findings will be shared in the public domain via a range of dissemination means e.g. publications and conference presentations.
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 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, services users, and the public, and aims to produce generalisable and publicly available information to inform future decisions over the priorities for reducing HNC inequalities in England.
The funding comes from a joint call on cancer inequalities from Oracle Cancer Trust and North West Cancer Research.
Funding to continue the work described will be sought on an ongoing basis if required.
The funders will have no ability to suppress or otherwise limit the publication of findings.
An individual from the University of Naples, Italy and an individual from the London School of Hygiene and Topical Medicine, UK will act in an advisory capacity for the project but neither of these individuals nor anyone from their organisations will have access to the Data.
Data will be accessed by members of the research project team based at Newcastle University. It may also be accessed by undergraduate, Masters or PhD students affiliated with Newcastle University. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to Newcastle University’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of Newcastle University. Newcastle University would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
A convenor of CHANGES HNC PPI group has helped refine the purpose of the research. They strongly support the use of the Data for the purposes described above. The PPI lead and the CHANGES group will provide PPI input throughout the project.
Processing activities
No data will flow into NHS England for the purposes of this Data Sharing Agreement (DSA).
NHS England will provide access to the relevant records from Hospital Episode Statistics (Admitted Patient Care and Outpatients) and the pseudonymised NDRS Cancer consolidated datasets - Packages 10, 12 and 14) to Newcastle University.
• Contain special categories of personal data but with no direct identifying data items. The Data will be pseudonymised and individuals cannot be reidentified through linkage with other data in the possession of the recipient.
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.
The Data will not be transferred to any other location.
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 will be 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.
Remote processing will be from secure locations within England.
The Data will not leave England at any time.
Access will be restricted to employees and students of Newcastle University who have authorisation from the Principal Investigators. All employees and students accessing the data will comply with the requirements of the Data Protection Act 2018.
All personnel accessing the Data have been appropriately trained in data protection and confidentiality.
The data provided by NHS England derives from several datasets which have been linked by NHS England. The pseudonymised dataset will be merged with geographical codes only (for example, LSOA merged with Urban/Rural indicator and other deprivation measures). The pseudonymised dataset will not be individually linked to any other data.
There will be no requirement and no attempt to reidentify individuals when using the Data..
Expected output
’The expected outputs of the processing will be:
• Submission to peer reviewed journals specialising in head and neck cancer and/or epidemiology. Papers will be on (i) Incidence patterns; (ii) Survival patterns, and (iii) Mediation analyses. The Data Controller anticipates publishing the incidence paper (i) within 8 months of data receipt, whilst (ii) and (iii) will be completed within 6 months of the end of the project registration period.
• Presentations of the findings to Newcastle University colleagues at internal University events, as the opportunity arises.
• Presentations at appropriate conferences such as the British Association of Head and Neck Oncologists over the 12-24 month period following project registration end.
• Provide an update to deprivation and region-specific life tables for England and Wales at an earlier time period than is currently available. The Data Controller anticipates this will be available within 6 months of the start of the project period.
• Create a database of incidence and survival estimates which will be freely available online, alongside summary tables, funnel plots, interactive graphics, and maps to illustrate variability between different population groups across regions and how these have changed over time. These outputs will be timed with the end of the project registration period.
• Convene a group of HNC stakeholders (e.g. health professionals; Cancer Alliance; Charity; Government; and PPI representatives; researchers) in two consecutive online workshops to develop recommendations for next steps for research, policy, and practice to be disseminated e.g. via publications. These outputs are planned within the project registration period.
• Develop recommendations for next steps in terms of practice, policy, intervention development and research for dissemination e.g. via publications after the end of the project registration period.
The outputs listed above will only contain aggregated information with small numbers supressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
PPI:
• PPI involvement provided by a HNC survivor and CHANGES (HNC PPI group established in a deprived area of North East England) to have a focus on dissemination (to whom and how, as well as assisting with developing key messages) and identifying priorities for follow-on research.
• Lay summaries of findings (support provided by the HNC survivor and CHANGES) circulated via publications, the project website, and charities.
• Other routes of lay engagement as suggested by the PPI group.
Communications will be timed to correspond with their relevant output:
• Briefing document provided to the Cancer Alliances.
• Project website communicating progress and findings, including lay summaries.
• Social media (Twitter account) to communicate progress and findings e.g. publicising journal articles and conference presentations.
• Infographics (including interactive graphics and maps) on project website.
• High impact journals (e.g. Cancer, Oral Oncology) with open access (taking advantage of Newcastle University’s arrangements with publishers)
• Submit abstracts to conferences e.g. British Association of Head and Neck Oncologists, Society for Social Medicine
• Webinars open to healthcare professionals (including medical, nursing and allied health educators), GPs, and the Cancer Alliances to discuss findings and promote professional HNC CPD.
• Charities e.g. dissemination of lay summaries and published papers (if permissible).
Dissemination of outputs will follow the following steps: 1) Short term: HNC incidence; 2) medium term: HNC survival; and 3) long term: HNC mediation modelling.
Expected measurable benefits
The findings of this research study are expected to contribute to evidence-based decision-making for policy makers, local decision-makers, healthcare workers, and patients to inform best practice to improve care, treatment and experience of health care users relevant to the subject matter of the study (HNC inequalities).
The use of the Data could:
• Generate contemporary understanding of inequalities in HNC nationally and regionally (previous analyses use data from up to 2006 in England and 2008 for Scotland only).
• Help the system better understand the health and care needs of HNC populations and to not exacerbate any present inequalities further. In particular this research could illuminate the mechanisms which link deprivation, region, and HNC outcomes.
• Advance the understanding of regional and national trends in HNC care needs.
• Explore what happened during the peri-pandemic period to HNC incidence and survival. This would provide the first robust assessment of the impact of the COVID-19 pandemic on inequalities across the HNC pathway which in turn would highlight any learning points for future pandemic planning and the implication of such an event for HNC care.
• Increase awareness of inequalities in the HNC pathways among health professionals involved in HNC diagnosis and treatment.
• Create an easily accessible and free resource which others (healthcare professionals, service providers, policy-makers, patients, general population) can access to obtain information on inequalities in HNC, regionally and nationally.
• Provide an exemplar of how to maximise the value and information that can be gained from NHS datasets, by using rigorous methods of analysis and imaginative ways to summarise, display and communicate results.
• Build capacity: project staff will gain knowledge around health inequalities and develop experience in using “Big Data” and advanced SEM-based approaches for analysis.
• Generate a comprehensive database of patient-level data which can be used to answer further research questions relating to HNC.
• Lead to identification or improvement of healthcare system design for patients in deprived regions with HNC.
• Inform planning health services and programmes (e.g. those improving equity of access, experience, and outcomes for HNC patients). In particular, highlighting points where effective interventions could have the most impact. This could help benefit the provision of health care for the HNC patient population.
• Inform decisions on effective allocation of funding for HNC according to health needs e.g. by areas of higher HNC incidence and/or where deprivation is most pronounced; project findings will provide a baseline against which any such changes can be evaluated.
• Provide a mechanism for checking the quality of care - for example, by identifying regional areas of good practice to learn from, or regional areas with poorer practice which need to be addressed.
• Provide aggregated data to health professionals, service providers, and policy-makers to inform local (and national) strategies to address inequalities.
• Support post-graduate research study within the Population Health Sciences Institute at Newcastle University aligned to the inequalities theme and NIHR Patient Safety Research Collaboration seeking to research inequalities in areas of disadvantage.
• Stimulate follow-on research around the development and testing of strategies, policies, and interventions to ameliorate HNC inequalities.
• Long-term help contribute to cost savings for the NHS relating to early cancer detection, reduced need for challenging treatments and/or extensive follow up care and support from a range of other clinical specialities e.g. speech and language therapy (HNC can cause changes to everyday functioning of speech, voice, and swallowing ability) and mental health services (HNC cancer patients have higher rates of pre-existing mental health conditions such as anxiety and depression; experience trauma, have restricted access to good support, higher risk of suicide, and less successful application of cognitive and behavioural therapy relative to survivors in other cancers).
• Potential reduction in the number of HNC survivors unable to work for long periods and/or permanently if cancers can be caught and treated earlier.
Dissemination of the findings has no direct benefit to those patients already diagnosed with HNC. Benefits will instead relate to future HNC diagnoses. This is because long term initiatives as a result of this work could: reduce inequalities in HNC incidence and survival by understanding the underlying causes of these differentials. This may involve one or more of; increasing HNC diagnoses at an earlier stage, increase the proportion of patients receiving optimal HNC directed cancer treatment, increasing HNC symptom awareness. Given that HNC is the 8th most common cancer in the UK (4th most common in males) and annually there are around 4,100 deaths per annum in the UK, the magnitude of the benefits listed above for this patient population is large. These changes will thus be welcomed by all HNC patients (not just those residing in areas of disadvantage) as opportunities to reduce the trauma associated with diagnosis, treatment, and living with and beyond HNC.
Depending on where HNC inequalities are found to be most pronounced, specific benefits to certain patient groups (e.g., those resident in areas of higher deprivation, those with comorbid conditions) are likely to be observed if targeted provision is deemed an appropriate research outcome. Such benefits are feasible as this project’s focus will serve to promote research into underrepresented, vulnerable, and disadvantaged HNC patient populations (which can otherwise be missed using clinical trial methodologies).
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 practitioner charged with making policy decisions in relation to HNC patients.
Recipients of the outputs will need to take action based on the information provided to them in order to realise the potential improvement opportunities. To assist with this process, HNC stakeholders (e.g. health professionals, Cancer Alliances, Integrated Care Boards, charity, government and PPI representative, researchers) will be invited to two consecutive online workshops reporting the study’s findings and more importantly to help discuss/prepare the next step recommendations (including for policy, practice, and intervention development and research).
Listed benefits (see earlier) will be achieved through collaboration of the research team with health professionals, service providers, and policy makers. The funder will not directly be involved with the research but will assist with publicising the outputs of the work. Whilst benefits of this research are not directly measurable, engagement, interest in the findings, and education as a result of this work will raise awareness of HNC disparities.
Finally, all the project outputs (See Section ‘Objective for Processing’) achieve the stated purposes and thus justify the benefits of processing.
Several actions will be taken to optimise any potential public benefits of this data’s use. Efforts will be made to advertise the findings to a wider audience. This will include engaging with the project’s website and Twitter feed, as well as utilising Newcastle University’s media team to publicise the study’s findings.
The funding charities (Oracle Cancer Trust and North West Cancer Research) will also be updated with the research findings. Links that Consultant James O’Hara and Professor Linda Sharp have with the HNC community will also be utilised to assist with further publicity and dissemination of findings from this research study.
Benefits reported so far
Incidence and mortality analyses has been completed on these datasets and are starting to work on the survival and structural equation modelling aspects of the project. Results will imminently be shared at a national Head and Neck Cancer conference, and publications on these same data are being prepared. Work has led to the establishment of further collaborations with other research teams based in the UK, and have also formed the foundation of a further research funding proposal.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Non-Sensitive | System Access | Does not include the flow of confidential data |
| Hospital Episode Statistics Outpatients (HES OP) | Anonymised - ICO Code Compliant | Non-Sensitive | System Access | Does not include the flow of confidential data |
| NDRS Cancer Consolidated Data Set | Anonymised - ICO Code Compliant | Non-Sensitive | System Access | Does not include the flow of confidential data |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
No files recorded as released under this agreement.
Version history
The register lists each renewal of this agreement as a separate row. This site has 3 versions.
DARS-NIC-726177-R0H8V-v2.2 5 September 2025 to 29 September 2026
- Title
- Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); NDRS Cancer Consolidated Data Set
What changed from DARS-NIC-726177-R0H8V-v1.2
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-09-05 |
Unchanged: Objective for processing, Processing activities, Expected output, Expected measurable benefits, Benefits reported.
DARS-NIC-726177-R0H8V-v1.2 30 May 2025 to 29 September 2026
- Title
- Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); NDRS Cancer Consolidated Data Set
What changed from DARS-NIC-726177-R0H8V-v0.8
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2025-05-30 | |
| End date | 2026-09-29 |
Objective for processing
[21 paragraphs unchanged]
•
NDRS
Cancer
Registration
Consolidated
– used as the ‘spine’ dataset. It is necessary to determine who
[66 words unchanged]
explained by variations observed by deprivation and region (or other confounding factors).
[22 paragraphs unchanged]
Benefits reported
Yielded Benefits is not a requirement for new applications.
Incidence and mortality analyses has been completed on these datasets and are starting to work on the survival and structural equation modelling aspects of the project. Results will imminently be shared at a national Head and Neck Cancer conference, and publications on these same data are being prepared. Work has led to the establishment of further collaborations with other research teams based in the UK, and have also formed the foundation of a further research funding proposal.
Unchanged: Processing activities, Expected output, Expected measurable benefits.
Objective for processing
Newcastle University requires access to NHS England data for the purpose of the following research project:
Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region.
The following is a summary of the aims of the research project as provided by Newcastle University:
Head and neck cancer (HNC) includes cancers of the mouth, throat, and voice box. These cancers are common in people who smoke and drink excessive alcohol. They particularly affect people living in more deprived areas and the North, including North West England (NWE) and North Wales (NW). These differences are called inequalities.
In 2020, during the COVID-19 pandemic, 20% fewer HNC were diagnosed in North England. This drop was not seen in other areas. This may mean that inequalities in HNC are now even bigger than they were before the pandemic. Even before the pandemic, we didn’t really understand the extent of reasons for inequalities in HNC: researchers have not looked thoroughly at national and regional data since around 2014. Our research will do this by bringing together up-to-date information from national databases to help work out the size of the problem and how to reduce inequalities in HNC.
The specific research questions are as follows:
(1) Determine how early HNCs were when diagnosed and how they were treated, including whether where patients lived (both region and deprivation status of area or residence) affected this. The main analysis will look at England as a whole. Sub-group analyses will focus on the NWE and NW.
(2) Compare the numbers of deprived and affluent patients alive 1-year after HNC diagnosis (survival).
(3) Compare HNC diagnosis, treatment and survival with data from before and during the pandemic.
(4) Use advanced statistical methods (mediation models) to find out the reasons for inequalities in survival.
(5) Work with patients, charities, and health professionals to come up with suggestions for what needs to happen to reduced HNC inequalities.
For aims (1)-(3), the main analysis will include all of England. Sub-group analyses will be conducted for NWE and NW (this is a particular interest of the funder).
This research project will build on a background of previous work in HNC which has found inequalities and poorer survival in patients living in the most deprived areas of the UK. This is thought to be related to: i) late stage at diagnosis; ii) diagnosis as an emergency and; iii) delayed treatment receipt. It is also known that in other cancers, patients living in deprived areas do not always receive the most appropriate treatment, even after considering other factors which could influence this such as the number of other health conditions (comorbidities) they have.
Studies in HNC in Scotland have previously found different findings. For example, a study using Scottish audit data found that inequalities in HNC survival disappear when stage is accounted for. In comparison, a study using Scottish cancer registry and Head and Neck 5000 data did find survival differences by deprivation and income when stage was considered. Limitations with the methods used in these studies may explain these differences. It seems likely that the real situation is more complex i.e. instead of treating all potential factors on survival as having a direct influence, that instead, indirect effects are also considered. For example deprivation could influence treatment and then survival (indirect) as well having direct effects on survival too. New work using more up to date methods (e.g. using causal inference) is needed.
Previous work has also shown that living in a deprived community in the North is associated with worse health outcomes than living in a deprived community in London. Yet HNC outcomes by region have not been investigated since the early 2000s even though it is known that age-standardised incidence rates are highest in the North East and North West. Finally, Cancer Alliance data from during the pandemic suggests that HNC diagnoses fell by 20% in some parts of Northern England but not elsewhere. The impact of the pandemic on HNC outcomes still remains unknown.
This data request is for a standalone project which commenced start 2024 and has three phases:
1) Developing a database of HNC incidence and survival estimates.
2) Understanding how deprivation is related to survival (Mediation model analyses).
3) Development of recommendations for HNC policy, intervention development, and research.
The scope of the data use will be across all three phases of this research project.
The following NHS England Data will be accessed:
• NDRS Cancer Consolidated – used as the ‘spine’ dataset. It is necessary to determine who was diagnosed with pathologically-confirmed head and neck cancer in the population of interest during the time period of interest. We will obtain from this dataset demographic (e.g. sex, age, ethnicity, region) and clinical information (e.g. tumour grade, size, number of tumours, comorbidities (Charlson Comorbidity Index), route to diagnosis and treatments) on HNC. These data will enable examination of HNC incidence and survival, determining if inequalities are explained by variations observed by deprivation and region (or other confounding factors).
• Hospital Episode Statistics
o Admitted Patient Care – necessary to provide additional information on persons diagnosed with HNC including surgical procedures received and other conditions. These data will enable examination of variations in incidence and survival in HNC and whether factors such as comorbidities (considered individually and as total number) and surgical treatments received explain variations by deprivation and region. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
o Outpatients – necessary to provide additional information on persons diagnosed with HNC including clinical diagnoses, specialist service provision, and consultant details. These data will be used to determine if variations in incidence and survival in HNC are explained by patient comorbidities (individual and number of), specialism referred to and/or, consultant workload. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
The Data is required for the above aims because the information will provide details on: i) all HNC registrations in the time frame of interest and; ii) demographic and clinical variables of interest. Combined, this data enables analyses to be undertaken exploring associations in HNC diagnosis, treatment, and survival by both region and deprivation, allowing for control of important covariates.
The level of the Data will be:
• Pseudonymised
The Data in Cancer Consolidated Dataset will be minimised as follows and the output will be limited to include;
• The conditions relevant to the study identified by specific ICD-10 codes (C00, C01, C02, C03, C04, C05, C06, C07, C08, C09, C10, C11, C12, C13, C14, C30, C31, C32, and C76).
• The data between patients with a date of diagnosis from 01/01/2016 and to the latest date available at the time of data request. This will enable the analysis of HNC inequalities both pre- and during the pandemic.
Newcastle University is the sponsor and will be the sole Controller for the released dataset.
The Oracle Cancer Trust and North West Cancer Research are joint research funders. Neither the Oracle Cancer Trust and North West Cancer Research will carry out any data controllership or processing activities. Once the data has been processed, anonymised, aggregated findings will be shared in the public domain via a range of dissemination means e.g. publications and conference presentations.
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 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, services users, and the public, and aims to produce generalisable and publicly available information to inform future decisions over the priorities for reducing HNC inequalities in England.
The funding comes from a joint call on cancer inequalities from Oracle Cancer Trust and North West Cancer Research.
Funding to continue the work described will be sought on an ongoing basis if required.
The funders will have no ability to suppress or otherwise limit the publication of findings.
An individual from the University of Naples, Italy and an individual from the London School of Hygiene and Topical Medicine, UK will act in an advisory capacity for the project but neither of these individuals nor anyone from their organisations will have access to the Data.
Data will be accessed by members of the research project team based at Newcastle University. It may also be accessed by undergraduate, Masters or PhD students affiliated with Newcastle University. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to Newcastle University’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of Newcastle University. Newcastle University would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
A convenor of CHANGES HNC PPI group has helped refine the purpose of the research. They strongly support the use of the Data for the purposes described above. The PPI lead and the CHANGES group will provide PPI input throughout the project.
Expected output
’The expected outputs of the processing will be:
• Submission to peer reviewed journals specialising in head and neck cancer and/or epidemiology. Papers will be on (i) Incidence patterns; (ii) Survival patterns, and (iii) Mediation analyses. The Data Controller anticipates publishing the incidence paper (i) within 8 months of data receipt, whilst (ii) and (iii) will be completed within 6 months of the end of the project registration period.
• Presentations of the findings to Newcastle University colleagues at internal University events, as the opportunity arises.
• Presentations at appropriate conferences such as the British Association of Head and Neck Oncologists over the 12-24 month period following project registration end.
• Provide an update to deprivation and region-specific life tables for England and Wales at an earlier time period than is currently available. The Data Controller anticipates this will be available within 6 months of the start of the project period.
• Create a database of incidence and survival estimates which will be freely available online, alongside summary tables, funnel plots, interactive graphics, and maps to illustrate variability between different population groups across regions and how these have changed over time. These outputs will be timed with the end of the project registration period.
• Convene a group of HNC stakeholders (e.g. health professionals; Cancer Alliance; Charity; Government; and PPI representatives; researchers) in two consecutive online workshops to develop recommendations for next steps for research, policy, and practice to be disseminated e.g. via publications. These outputs are planned within the project registration period.
• Develop recommendations for next steps in terms of practice, policy, intervention development and research for dissemination e.g. via publications after the end of the project registration period.
The outputs listed above will only contain aggregated information with small numbers supressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
PPI:
• PPI involvement provided by a HNC survivor and CHANGES (HNC PPI group established in a deprived area of North East England) to have a focus on dissemination (to whom and how, as well as assisting with developing key messages) and identifying priorities for follow-on research.
• Lay summaries of findings (support provided by the HNC survivor and CHANGES) circulated via publications, the project website, and charities.
• Other routes of lay engagement as suggested by the PPI group.
Communications will be timed to correspond with their relevant output:
• Briefing document provided to the Cancer Alliances.
• Project website communicating progress and findings, including lay summaries.
• Social media (Twitter account) to communicate progress and findings e.g. publicising journal articles and conference presentations.
• Infographics (including interactive graphics and maps) on project website.
• High impact journals (e.g. Cancer, Oral Oncology) with open access (taking advantage of Newcastle University’s arrangements with publishers)
• Submit abstracts to conferences e.g. British Association of Head and Neck Oncologists, Society for Social Medicine
• Webinars open to healthcare professionals (including medical, nursing and allied health educators), GPs, and the Cancer Alliances to discuss findings and promote professional HNC CPD.
• Charities e.g. dissemination of lay summaries and published papers (if permissible).
Dissemination of outputs will follow the following steps: 1) Short term: HNC incidence; 2) medium term: HNC survival; and 3) long term: HNC mediation modelling.
Benefits reported
Incidence and mortality analyses has been completed on these datasets and are starting to work on the survival and structural equation modelling aspects of the project. Results will imminently be shared at a national Head and Neck Cancer conference, and publications on these same data are being prepared. Work has led to the establishment of further collaborations with other research teams based in the UK, and have also formed the foundation of a further research funding proposal.
DARS-NIC-726177-R0H8V-v0.8 29 September 2024 to 28 September 2025
- Title
- Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region
- Commercial
- No
- Sublicensing
- No
- Datasets
- 3
- Files released
- 0
Datasets: Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); NDRS Cancer Consolidated Data Set
Objective for processing
Newcastle University requires access to NHS England data for the purpose of the following research project:
Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region.
The following is a summary of the aims of the research project as provided by Newcastle University:
Head and neck cancer (HNC) includes cancers of the mouth, throat, and voice box. These cancers are common in people who smoke and drink excessive alcohol. They particularly affect people living in more deprived areas and the North, including North West England (NWE) and North Wales (NW). These differences are called inequalities.
In 2020, during the COVID-19 pandemic, 20% fewer HNC were diagnosed in North England. This drop was not seen in other areas. This may mean that inequalities in HNC are now even bigger than they were before the pandemic. Even before the pandemic, we didn’t really understand the extent of reasons for inequalities in HNC: researchers have not looked thoroughly at national and regional data since around 2014. Our research will do this by bringing together up-to-date information from national databases to help work out the size of the problem and how to reduce inequalities in HNC.
The specific research questions are as follows:
(1) Determine how early HNCs were when diagnosed and how they were treated, including whether where patients lived (both region and deprivation status of area or residence) affected this. The main analysis will look at England as a whole. Sub-group analyses will focus on the NWE and NW.
(2) Compare the numbers of deprived and affluent patients alive 1-year after HNC diagnosis (survival).
(3) Compare HNC diagnosis, treatment and survival with data from before and during the pandemic.
(4) Use advanced statistical methods (mediation models) to find out the reasons for inequalities in survival.
(5) Work with patients, charities, and health professionals to come up with suggestions for what needs to happen to reduced HNC inequalities.
For aims (1)-(3), the main analysis will include all of England. Sub-group analyses will be conducted for NWE and NW (this is a particular interest of the funder).
This research project will build on a background of previous work in HNC which has found inequalities and poorer survival in patients living in the most deprived areas of the UK. This is thought to be related to: i) late stage at diagnosis; ii) diagnosis as an emergency and; iii) delayed treatment receipt. It is also known that in other cancers, patients living in deprived areas do not always receive the most appropriate treatment, even after considering other factors which could influence this such as the number of other health conditions (comorbidities) they have.
Studies in HNC in Scotland have previously found different findings. For example, a study using Scottish audit data found that inequalities in HNC survival disappear when stage is accounted for. In comparison, a study using Scottish cancer registry and Head and Neck 5000 data did find survival differences by deprivation and income when stage was considered. Limitations with the methods used in these studies may explain these differences. It seems likely that the real situation is more complex i.e. instead of treating all potential factors on survival as having a direct influence, that instead, indirect effects are also considered. For example deprivation could influence treatment and then survival (indirect) as well having direct effects on survival too. New work using more up to date methods (e.g. using causal inference) is needed.
Previous work has also shown that living in a deprived community in the North is associated with worse health outcomes than living in a deprived community in London. Yet HNC outcomes by region have not been investigated since the early 2000s even though it is known that age-standardised incidence rates are highest in the North East and North West. Finally, Cancer Alliance data from during the pandemic suggests that HNC diagnoses fell by 20% in some parts of Northern England but not elsewhere. The impact of the pandemic on HNC outcomes still remains unknown.
This data request is for a standalone project which commenced start 2024 and has three phases:
1) Developing a database of HNC incidence and survival estimates.
2) Understanding how deprivation is related to survival (Mediation model analyses).
3) Development of recommendations for HNC policy, intervention development, and research.
The scope of the data use will be across all three phases of this research project.
The following NHS England Data will be accessed:
• Cancer Registration – used as the ‘spine’ dataset. It is necessary to determine who was diagnosed with pathologically-confirmed head and neck cancer in the population of interest during the time period of interest. We will obtain from this dataset demographic (e.g. sex, age, ethnicity, region) and clinical information (e.g. tumour grade, size, number of tumours, comorbidities (Charlson Comorbidity Index), route to diagnosis and treatments) on HNC. These data will enable examination of HNC incidence and survival, determining if inequalities are explained by variations observed by deprivation and region (or other confounding factors).
• Hospital Episode Statistics
o Admitted Patient Care – necessary to provide additional information on persons diagnosed with HNC including surgical procedures received and other conditions. These data will enable examination of variations in incidence and survival in HNC and whether factors such as comorbidities (considered individually and as total number) and surgical treatments received explain variations by deprivation and region. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
o Outpatients – necessary to provide additional information on persons diagnosed with HNC including clinical diagnoses, specialist service provision, and consultant details. These data will be used to determine if variations in incidence and survival in HNC are explained by patient comorbidities (individual and number of), specialism referred to and/or, consultant workload. This data will also be used to augment, if possible, information on ethnicity recorded on the NCRD.
The Data is required for the above aims because the information will provide details on: i) all HNC registrations in the time frame of interest and; ii) demographic and clinical variables of interest. Combined, this data enables analyses to be undertaken exploring associations in HNC diagnosis, treatment, and survival by both region and deprivation, allowing for control of important covariates.
The level of the Data will be:
• Pseudonymised
The Data in Cancer Consolidated Dataset will be minimised as follows and the output will be limited to include;
• The conditions relevant to the study identified by specific ICD-10 codes (C00, C01, C02, C03, C04, C05, C06, C07, C08, C09, C10, C11, C12, C13, C14, C30, C31, C32, and C76).
• The data between patients with a date of diagnosis from 01/01/2016 and to the latest date available at the time of data request. This will enable the analysis of HNC inequalities both pre- and during the pandemic.
Newcastle University is the sponsor and will be the sole Controller for the released dataset.
The Oracle Cancer Trust and North West Cancer Research are joint research funders. Neither the Oracle Cancer Trust and North West Cancer Research will carry out any data controllership or processing activities. Once the data has been processed, anonymised, aggregated findings will be shared in the public domain via a range of dissemination means e.g. publications and conference presentations.
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 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, services users, and the public, and aims to produce generalisable and publicly available information to inform future decisions over the priorities for reducing HNC inequalities in England.
The funding comes from a joint call on cancer inequalities from Oracle Cancer Trust and North West Cancer Research.
Funding to continue the work described will be sought on an ongoing basis if required.
The funders will have no ability to suppress or otherwise limit the publication of findings.
An individual from the University of Naples, Italy and an individual from the London School of Hygiene and Topical Medicine, UK will act in an advisory capacity for the project but neither of these individuals nor anyone from their organisations will have access to the Data.
Data will be accessed by members of the research project team based at Newcastle University. It may also be accessed by undergraduate, Masters or PhD students affiliated with Newcastle University. Any student working with the Data held under this Data Sharing Agreement (DSA) must have completed relevant data protection and confidentiality training and are subject to Newcastle University’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of Newcastle University. Newcastle University would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
A convenor of CHANGES HNC PPI group has helped refine the purpose of the research. They strongly support the use of the Data for the purposes described above. The PPI lead and the CHANGES group will provide PPI input throughout the project.
Expected output
’The expected outputs of the processing will be:
• Submission to peer reviewed journals specialising in head and neck cancer and/or epidemiology. Papers will be on (i) Incidence patterns; (ii) Survival patterns, and (iii) Mediation analyses. The Data Controller anticipates publishing the incidence paper (i) within 8 months of data receipt, whilst (ii) and (iii) will be completed within 6 months of the end of the project registration period.
• Presentations of the findings to Newcastle University colleagues at internal University events, as the opportunity arises.
• Presentations at appropriate conferences such as the British Association of Head and Neck Oncologists over the 12-24 month period following project registration end.
• Provide an update to deprivation and region-specific life tables for England and Wales at an earlier time period than is currently available. The Data Controller anticipates this will be available within 6 months of the start of the project period.
• Create a database of incidence and survival estimates which will be freely available online, alongside summary tables, funnel plots, interactive graphics, and maps to illustrate variability between different population groups across regions and how these have changed over time. These outputs will be timed with the end of the project registration period.
• Convene a group of HNC stakeholders (e.g. health professionals; Cancer Alliance; Charity; Government; and PPI representatives; researchers) in two consecutive online workshops to develop recommendations for next steps for research, policy, and practice to be disseminated e.g. via publications. These outputs are planned within the project registration period.
• Develop recommendations for next steps in terms of practice, policy, intervention development and research for dissemination e.g. via publications after the end of the project registration period.
The outputs listed above will only contain aggregated information with small numbers supressed as appropriate in line with the relevant disclosure rules for the datasets from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
PPI:
• PPI involvement provided by a HNC survivor and CHANGES (HNC PPI group established in a deprived area of North East England) to have a focus on dissemination (to whom and how, as well as assisting with developing key messages) and identifying priorities for follow-on research.
• Lay summaries of findings (support provided by the HNC survivor and CHANGES) circulated via publications, the project website, and charities.
• Other routes of lay engagement as suggested by the PPI group.
Communications will be timed to correspond with their relevant output:
• Briefing document provided to the Cancer Alliances.
• Project website communicating progress and findings, including lay summaries.
• Social media (Twitter account) to communicate progress and findings e.g. publicising journal articles and conference presentations.
• Infographics (including interactive graphics and maps) on project website.
• High impact journals (e.g. Cancer, Oral Oncology) with open access (taking advantage of Newcastle University’s arrangements with publishers)
• Submit abstracts to conferences e.g. British Association of Head and Neck Oncologists, Society for Social Medicine
• Webinars open to healthcare professionals (including medical, nursing and allied health educators), GPs, and the Cancer Alliances to discuss findings and promote professional HNC CPD.
• Charities e.g. dissemination of lay summaries and published papers (if permissible).
Dissemination of outputs will follow the following steps: 1) Short term: HNC incidence; 2) medium term: HNC survival; and 3) long term: HNC mediation modelling.
Benefits reported
Yielded Benefits is not a requirement for new applications.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds.
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December 2024 —
first listed. 1 version: DARS-NIC-726177-R0H8V-v0.8
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June 2025
1 version added: DARS-NIC-726177-R0H8V-v1.2
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October 2025
1 version added: DARS-NIC-726177-R0H8V-v2.2
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-726177-R0H8V, “Investigating and explaining contemporary patterns and trends in inequalities across the head and neck cancer pathway: understanding the roles of deprivation and region”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-726177-r0h8v/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-726177-R0H8V to see the original rows.