Investigating inequalities in utilisation of targeted therapies
University of Newcastle upon Tyne · Academic
In term In term in the September 2026 edition: the latest version runs to 14 August 2027.
- Reference
- DARS-NIC-656847-K4L8H
- Current version
- v2.4
- Term of current version
- 15 August 2024 to 14 August 2027
- Start date
- Before 3 February 2023
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 7
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 inequalities in utilisation of targeted therapies.
The following is a summary of the aims of the research project provided by Newcastle University:
The way cancer is treated is changing. Novel treatments (targeted therapies and immunotherapies) ‘target’ cancer cells in the body. This means that cancer treatment is becoming increasingly personalised with a move away from ‘one size fits all’ traditional treatment approaches. Targeted treatments – and by extension, licensing of new immunotherapies which use the immune system to find and attack the cancer - work differently to chemotherapy. Targeted therapies interfere with the way that cancer cells grow and divide. As they target certain cells and processes, they are not suitable for all patients. This means that patients usually need tests (known as a predictive biomarker test(s)) to determine if a targeted treatment and/or immunotherapy is likely to work for them.
It has been known for a long time that there are inequalities in the receipt of traditional cancer treatments such as chemotherapy and surgery. For example, older patients and those who live in more deprived areas, are less likely to receive these treatments when taking differences in their cancer and health into account.
Previous work using data previously supplied has found inequalities in novel treatment receipt for both lung and breast cancers. In the most common type of lung cancer (non-small cell lung cancer (NSCLC)), patients living in the most deprived areas of England were found to have reduced access to targeted therapy and immunotherapy drugs. Similar inequalities were also seen in the receipt of one targeted treatment (trastuzumab – a targeted drug used in women with a certain type of breast cancer (HER2+)), but these associations were much less pronounced than those for NSCLC patients. As these treatments become available for more and more cancers, further research is needed to investigate whether: (i) similar associations are seen for other cancers and for other drugs/drug classes; (ii) the magnitude of association varies by cancer site; (iii) the magnitude of association differs by class of drug; and (iv) the magnitude of association varies (reduces) over time since the drug(s) become available. This project will examine the “real world” outcomes (survival) of patients who utilise these drugs, and whether this varies by deprivation and other socio-economic/clinical variables and provide a more up-to-date investigation of socio-economic inequalities in targeted treatments and immunotherapy receipt for cancer patients in England.
The following NHS England Data will be accessed:
• National Cancer Registration Database – necessary to determine who was diagnosed with a pathologically-confirmed cancer of interest in the population during the time period of interest. From this dataset, Newcastle University will obtain demographic information (e.g. sex, age, ethnicity, region, Index of Multiple Deprivation (IMD)) and clinical information (e.g. tumour grade, size, number of tumours, metastases, routes to diagnosis and treatment). These data will enable examination of inequalities in the utilisation of targeted therapies across the cancers of interest.
• Hospital Episode Statistics (Linked Admitted Care - Inpatient) – necessary to determine specific comorbidities and to see if surgery receipt is within 12 months of systemic therapy.
• Hospital Episode Statistics (Linked - Outpatient) – necessary to determine specific comorbidities.
• Systemic Anti-Cancer Therapy (SACT) Registration Database – necessary to provide information on targeted treatment administered to persons diagnosed with a cancer of interest. These data will be used to determine associations in targeted therapy and/or immunotherapy utilisation with demographic and clinical data listed in the cancer registrations dataset.
• Cancer Waiting Times (Treatment Only) – necessary to provide information on whether patients were discussed at multi-disciplinary team (MDT) meeting.
• Somatic and Molecular Dataset – necessary to provide information on whether predictive biomarker testing occurred for persons diagnosed with a cancer of interest. This data will be used to determine associations of targeted therapy and/or immunotherapy utilisation in instances where a predictive biomarker test is a prerequisite treatment utilisation. Hence assessing the role of testing as a barrier to treatment access.
• National Lung Cancer Audit (NLCA) – necessary to determine smoking, performance, and Estimated glomerular Giltration Rate (EGFR) status of lung cancer patients in this analysis.
The level of the Data will be:
• Pseudonymised
Data will be minimised as follows:
• Limited to the conditions relevant to the study identified by specific ICD-10 codes: (Breast cancer ICD-10 50); lung cancer (ICD-10 C34); stomach cancer (ICD-10 C16); colorectal cancer (ICD-10 C18 - C21); liver cancer (ICD-10 C22); pancreas cancer (ICD-10 C25); cervix cancer (ICD-10 C53); endometrium cancer (ICD-10 C54); ovary cancer (ICD-10 C56); melanoma (ICD-10 C43); and kidney cancer (ICD-10 C64-C65).
• Limited to data between patients with a date of diagnosis from 01/01/2012 and/or earliest available date available for that dataset (e.g. Somatic and Molecular Dataset) to the latest date available at the time of the data extraction.
• Limited to the following geographic areas: England only.
• Only requesting data fields required for analysis.
Newcastle University 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 personal 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 interested 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, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by National Institute for Health and Care Research (NIHR). The funding is for the Newcastle Patient Safety Research Collaboration (PSRC) and is not specifically limited to the project described.
The funder(s) will have no availability to suppress or otherwise limit the publication of findings.
Data will be accessed by:
• Substantive employees of Newcaslte University
• Undergraduate, Masters or PhD students enrolled 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 [organisation’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 Public and Patient Involvement group is involved in the project. They helped refine the purpose of the research and strongly supported the collection of the data for the purposes described above, and were keen that research on these drugs should include all cancer sites for which the drugs are used.
Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out
Processing activities
No data will flow into NHS England for the purposes of this Data Sharing Agreement (DSA).
NHS England will provide the relevant records from Cancer Registration, Hospital Episode Statistics (Admitted Care - Inpatients), HES (Outpatients), Systemic Anti-Cancer Therapy Dataset (SACT), Cancer Waiting Times (Treatment Only), the Somatic and Molecular Dataset, and National Lung Cancer Audit (NLCA) to Newcastle University.
The Data will:
- contain 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.
The Data will not be transferred to any other location.
The Data will be stored on servers at Newcastle University.
Newcastle University uses offsite back-up services provided by Pulsant.
The Data will be accessed on site at the premises of Newcastle University.
The Data will be accessed by authorised personnel via remote access.
Newcastle University confirms and will provide evidence upon audit by NHS England that access via remote devices 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;
- Personnel are both prohibited and technically prevented from downloading or copying NHSE data to local devices;
- 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 agreement) 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 only. The data will not leave England at any time.
Access is restricted to employees or agents of Newcastle University 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.
There will be no requirement and no attempt to reidentify individuals when using the Data.
Researchers from the Population Health Sciences Institute, Newcastle University will analyse the Data for the purposes described above.
Expected output
The expected outputs of processing will be:
Submissions to peer reviewed scientific journals (on-going):
• Socio-demographic disparities in HER2+ breast cancer trastuzumab receipt: An English population-based analysis, in prep (anticipated to be published in 2024). Target journal: Cancer Epidemiology, Biomarkers and Prevention.
• Routes to diagnosis in NSCLC - do socio-demographics matter? An English population-based study, in prep (anticipated to be published in 2024). Target journal: Lung Cancer.
• Paper exploring survival and NSCLC novel treatment receipt.
• Paper exploring inequalities in treatment receipt in oestrogen receptor positive breast cancer.
Submission to peer-reviewed scientific journals for new analyses specialising in novel treatment inequalities. Papers will be on:
• Inequalities over time.
• Inequalities in novel versus targeted treatments.
• Inequalities by cancer site.
• Inequalities in drug class.
• Inequalities in survival.
• Presentations to Newcastle University’s colleagues at internal events.
• Presentations at conferences e.g. Social Science and Medicine Annual Scientific Meeting.
• Communications in published abstracts e.g. Journal of Epidemiology and Community Health.
• Publication in blog posts e.g. through the Centre for Translational Research in Public Health FUSE blog page; NIHR Newcastle Patient Safety Research Collaboration Blog.
Outputs will cover topics relating to inequalities in cancers of interest across the diagnosis, treatment, and outcomes pathway. The primary focus of the project is treatment utilisation. Areas that will be investigated in the extension will include inequalities in determinants of treatment (e.g. stage, route to diagnosis, waiting times, receipt of predictive biomarker testing), inequalities following treatment (e.g. net and cancer-specific survival) as well as an investigation of how inequalities have changed over time (i.e. before, during and post the COVID-19 pandemic).
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.
Outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals with open access to take advantage of Newcastle University’s arrangement with publishers) e.g. British Journal of Cancer; European Journal of Cancer.
• Submit abstracts to conferences e.g. Social Science and Medicine.
• Blogs e.g. Centre for Translational Research in Public Health FUSE blog; NIHR Newcastle Patient Safety Research Collaboration’s Blog.
The target dates for production and dissemination of the outputs are as follows:
• Submissions to peer reviewed scientific journals anticipated in 2026-2028 (medium to longer term).
• Presentations at Newcastle University’s internal events anticipated throughout 2025-2026 (short to medium term).
• Presentations at conferences anticipated in 2026 (medium term).
• Communications in published abstracts anticipated in 2026 (medium term).
• Publication in blog posts anticipated in 2026-2028 (medium to long term).
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 the care, treatment, and experience of patients diagnosed with cancers where targeted treatments and/or immunotherapies are licenced.
The use of the data could:
o Generate contemporary understanding of inequalities in cancers with targeted and/or immunotherapies licensed nationally across the diagnosis, treatment, and outcomes pathway. This aligns with the All Party Parliamentary Group of Cancer’s Inquiry into Inequalities in Cancer (i.e. need for more data and further research promotion into inequality causes and improved cancer experiences).
o Understand inequalities in the determinants of treatment (e.g. stage, route to diagnosis) and inequalities following treatment (e.g. net and cancer-specific survival).
o Help the system to better understand the health and social care needs of cancer populations with licenced targeted therapies and/or immunotherapies regarding treatment inequalities, the impact of early diagnosis and survival outcomes from receiving/not receiving treatment. Specifically, this data extension could identify how deprivation and outcomes in such cancers of interest (both pre- and post-treatment) are linked.
o Advance the promotion of research into underrepresented, vulnerable, and disadvantaged groups which are not always represented in clinical trials data i.e. those resident in areas of high deprivation.
o Lead to the identification of a need to improve novel treatments access for all patients (including those residents in deprived regions in England) along with health and care system design that improves health and care equity outcomes.
o Increase awareness of inequalities in cancers with licenced targeted therapies and/or immunotherapies and the pathways for health professionals involved in cancer diagnosis and treatment.
o Advance the understanding of national trends in targeted therapy and/or immunotherapy access needs.
o Explore what has happened in the time since 2017 and the impact of COVID-19 pandemic on targeted therapy and/or immunotherapy utilisation. This will provide the first robust assessment of the impact of the COVID-19 pandemic on treatment inequalities and would highlight any learning points for future pandemic planning and implications of such an event on novel treatment access.
o Inform health services for improving equity of treatment access. For example, this research could highlight where and in which cancers effective interventions could have the most impact for tacking inequalities.
o Inform decisions on how to effectively allocate and evaluate funding according to health inequality needs. Providing a baseline against which any future changes can be evaluated.
o Provide a mechanism for checking the quality of care e.g. identifying areas of good practice to learn from and areas of poorer practice which need to be addressed.
o Provide aggregated data to health professionals, service providers, and policy-makers to inform national strategies to address inequalities and to minimise any current inequality widening.
o Support research within the Population Health Science Institute (PHSI) at Newcastle University aligned to the inequalities theme and NIHR Newcastle Patient Safety Research Collaboration seeking to research health inequalities in patients’ resident in areas of disadvantage.
o Support knowledge creation or exploratory research (and the innovations and developments that might results from that exploratory work).
o Cost saving for the NHS potentially relating to early cancer detection, appropriate treatment access, and improved survival (ongoing depending on the outcomes of the research and the extent of inequalities observed).
o Advance research into better understanding what influences treatment decision-making and how this may explain inequalities in treatment.
o Understand whether survival benefits seen in trials of expensive targeted treatments and/or immunotherapies translate into similar benefits in real-world practice.
Dissemination of findings has no direct benefit to those patients already diagnosed with cancers where targeted treatments and/or immunotherapies are currently in use. Benefits instead relate to future cancer diagnoses where patients may be candidates for targeted therapies and/or immunotherapies. This is because long term initiatives from this work could: reduce inequalities in access to novel cancer treatments and increase the proportion of patients receiving optimal novel treatment directed care. In return, this may also lead to improved outcomes (e.g. survival).
The magnitude of the impact is likely to be large. This is because many patients are likely impacted by any inequalities in treatment provision. For example, from the work conducted to date on this dataset and the scope of inequalities reported by deprivation, it is possible to estimate crudely, that should inequalities be eradicated (i.e. the rate of treatment utilisation in the least deprived patients be applied to all other IMD quintiles) a further 41 patients would be anticipated to receive trastuzumab in HER2+ breast cancer out of a total population of 40,179 patients and a further 3,205 patients would utilise any novel anti-cancer therapy in a NSCLC context out of a population of 195,387.
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 individuals care practitioners charged with making policy decisions for or within the NHS particularly regarding treatment decisions in relation to cancer patients where target treatments and/or immunotherapies are licensed.
Listed benefits will be achieved through collaboration of the research team with health professionals, service providers, and policy makers.
Engagement and interest in the findings will raise awareness of treatment disparities and mark the first step towards tackling inequalities in treatment provision.
Benefits reported so far
The previous yielded benefits achieved to date are as follows:
• Publications in peer reviewed scientific journals:
• Norris R.P. et al. (2023) Socio-economic inequalities in novel NSCLC treatments during the era of tumour biomarker guided therapy: A population-based cohort study in a publicly funded healthcare systems, Journal of Thoracic Oncology, 18(8); 990-1002; https://doi.org/10.1016/j.jtho.2023.04.018.
This piece of work found significant inequalities in NSCLC novel anti-cancer therapy utilisation, with patients’ resident in the most deprived areas being 55% less likely to utilise these therapies compared to those residents in the least deprived areas. It was also observed that deprivation associations were stronger with targeted therapies compared to immunotherapy utilisation. Overall, the work has concluded that there is a reduced likelihood of treatment utilisation with a lower SES regardless of the free at the point of care service provided in the English publicly funded healthcare system. As with conventional cancer treatments and despite advances in care, it appears that low SES is a potential barrier to fair treatment utilisation in the context of these novel treatments. These findings have furthered understanding of the real-world use of novel anti-cancer therapies in England. Current work on this project has therefore provided evidence of real-world prescribing practice and has identified areas for further research (reasons for why there are these inequalities, exploring inequalities in biomarker testing, and finally, actions that can be taken moving forward to minimise the impact of inequalities on cancer treatment). This provides the foundation for further work exploring whether inequalities in access to treatment have resulted in variations in survival.
Published abstracts:
• Norris R.P. et al. (2023) Routes to diagnosis in lung cancer – do socio-demographics matter? An English population-based study, Journal of Epidemiology and Community Health, 77(Supp 1): A21.1-A21, http://dx.doi.org/10.1136/jech-2023-SSMabstracts.41.
• Norris R.P. et al (2023) Socio-economic inequalities in novel NSCLC treatments during the era of tumour biomarker guided therapy: a population-based cohort study, Journal of Epidemiology and Community Health, 77(Supp 1): A21-A22, https://jech.bmj.com/content/77/Suppl_1/A21.2.
• Norris R.P. et al (2023) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based cohort study, J. Thorac Oncol. 17(9): S5-S6: https://www.jto.org/article/S1556-0864(22)00358-6/fulltext.
Presentations at the following conferences:
• Norris. R.P. et al. (November 2021) Fair Treatment for All? Socio-economic inequalities in HER2+ breast cancer treatment utilisation, oral presentation, and poster as the NCRI Virtual Festival.
This work found that women residing in the most deprived areas in England were 8% less likely to received trastuzumab compared to women residing in the least deprived areas between 2012-2017.
• Norris. R.P. et al. (August 2022) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at IASLC 2022 World Conference on Lung Cancer, Vienna, Austria.
• Norris. R.P. et al. (September 2023) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at Social Science and Medicine Annual Scientific Meeting 2023, Newcastle, England.
• Norris R.P. et al. (September 2023) Routes to diagnosis in lung cancer – do socio-demographics matter? An English population-based study, Social Science and Medicine Annual Scientific Meeting 2023, Newcastle, England.
This work has shown that during 2012-2016, one third of lung cancer patients presented as emergencies. Routes to diagnosis were subject to distinct socio-demographic patterning (older, female, non-white ethnicity, resident areas of greater deprivation, with a SCLC tumour histology and multiple comorbidities) were more likely to present as emergencies. In contrast, two week wait patients were aged 60-80 years old, of white ethnicity, residents in areas of greater deprivation and tended to have no comorbidities.
Thesis publication:
• R.P. Norris (2023) Socio-economic inequalities in the utilisation of novel anti-cancer therapies, https://theses.ncl.ac.uk/jspui/handle/10443/6049.
Publication of blog posts:
• R.P. Norris (2020) Can your education, income or even your job affect your chances of receiving newer cancer treatments?
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 |
|---|---|---|---|---|
| NDRS Cancer Registrations | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked Cancer Waiting Times (Treatments only) | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked HES APC | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Linked HES Outpatient | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS National Lung Cancer Audit (NLCA) | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Somatic Molecular Dataset | Anonymised - ICO Code Compliant | Sensitive | One-Off | Does not include the flow of confidential data |
| NDRS Systemic Anti-Cancer Therapy Dataset (SACT) | Anonymised - ICO Code Compliant | Sensitive | One-Off | 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.
Patient opt-outs were not applied to any of the 7 files released under this agreement, across every version. About opt-outs
Files released against version 2.4 of this agreement, summarised by dataset.
| Dataset | Files | First released | Last released | Opt-outs applied |
|---|---|---|---|---|
| NDRS Cancer Registrations | 1 | October 2024 | October 2024 | No |
| NDRS Linked Cancer Waiting Times (Treatments only) | 1 | October 2024 | October 2024 | No |
| NDRS Linked HES APC | 1 | October 2024 | October 2024 | No |
| NDRS Linked HES Outpatient | 1 | October 2024 | October 2024 | No |
| NDRS National Lung Cancer Audit (NLCA) | 1 | October 2024 | October 2024 | No |
| NDRS Somatic Molecular Dataset | 1 | October 2024 | October 2024 | No |
| NDRS Systemic Anti-Cancer Therapy Dataset (SACT) | 1 | October 2024 | October 2024 | No |
Version history
The register lists each renewal of this agreement as a separate row. This site has 2 versions — earlier versions exist, but none has been listed in an edition this site holds.
DARS-NIC-656847-K4L8H-v2.4 15 August 2024 to 14 August 2027
- Title
- Investigating inequalities in utilisation of targeted therapies
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 7
Datasets: NDRS Cancer Registrations; NDRS Linked Cancer Waiting Times (Treatments only); NDRS Linked HES APC; NDRS Linked HES Outpatient; NDRS National Lung Cancer Audit (NLCA); NDRS Somatic Molecular Dataset; NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
What changed from DARS-NIC-656847-K4L8H-v1.3
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Title | Investigating inequalities in utilisation of targeted therapies | |
| Start date | 2024-08-15 | |
| End date | 2027-08-14 |
Datasets: + NDRS Linked HES Outpatient; + NDRS National Lung Cancer Audit (NLCA); + NDRS Somatic Molecular Dataset
Objective for processing
Newcastle University will access cancer registration data collected by the National Cancer Registration and Analysis Service (NCRAS; the national cancer registry in England) on patients with lung and breast cancer. They will access information about each patient, their tumour and the treatment that they have received. This will include information such as sex, ethnicity, cause of death and how they were diagnosed if they have other medical conditions, as well as their socio-economic background. This data will be analysed by Newcastle University to find out:
Newcastle University requires access to NHS England data for the purpose of the following research project: Investigating inequalities in utilisation of targeted therapies.
1. What percentage of patients received targeted therapy as part of their cancer treatment and how does this change by type of cancer, when the treatment is given and the geographical location of the patient.
The following is a summary of the aims of the research project provided by Newcastle University:
2. If the use of targeted therapy is different depending upon a patient's social and economic background (based upon where they live)
The way cancer is treated is changing. Novel treatments (targeted therapies and immunotherapies) ‘target’ cancer cells in the body. This means that cancer treatment is becoming increasingly personalised with a move away from ‘one size fits all’ traditional treatment approaches. Targeted treatments – and by extension, licensing of new immunotherapies which use the immune system to find and attack the cancer - work differently to chemotherapy. Targeted therapies interfere with the way that cancer cells grow and divide. As they target certain cells and processes, they are not suitable for all patients. This means that patients usually need tests (known as a predictive biomarker test(s)) to determine if a targeted treatment and/or immunotherapy is likely to work for them.
3. If the use of targeted therapy is different depending upon a patient's age when they are diagnosed.
It has been known for a long time that there are inequalities in the receipt of traditional cancer treatments such as chemotherapy and surgery. For example, older patients and those who live in more deprived areas, are less likely to receive these treatments when taking differences in their cancer and health into account.
4. What percentage of breast cancer patients have hormone receptor testing ( a test to see how the cells in the body receive a hormone to change how often they divide) and if the types of people receiving these tests are different depending on their age and background
Previous work using data previously supplied has found inequalities in novel treatment receipt for both lung and breast cancers. In the most common type of lung cancer (non-small cell lung cancer (NSCLC)), patients living in the most deprived areas of England were found to have reduced access to targeted therapy and immunotherapy drugs. Similar inequalities were also seen in the receipt of one targeted treatment (trastuzumab – a targeted drug used in women with a certain type of breast cancer (HER2+)), but these associations were much less pronounced than those for NSCLC patients. As these treatments become available for more and more cancers, further research is needed to investigate whether: (i) similar associations are seen for other cancers and for other drugs/drug classes; (ii) the magnitude of association varies by cancer site; (iii) the magnitude of association differs by class of drug; and (iv) the magnitude of association varies (reduces) over time since the drug(s) become available. This project will examine the “real world” outcomes (survival) of patients who utilise these drugs, and whether this varies by deprivation and other socio-economic/clinical variables and provide a more up-to-date investigation of socio-economic inequalities in targeted treatments and immunotherapy receipt for cancer patients in England.
5. If the use of targeted therapies helps more people to survive from cancer, and if it does, whether this increased survival rate is the same for all ages and social or economic backgrounds.
The following NHS England Data will be accessed:
• National Cancer Registration Database – necessary to determine who was diagnosed with a pathologically-confirmed cancer of interest in the population during the time period of interest. From this dataset, Newcastle University will obtain demographic information (e.g. sex, age, ethnicity, region, Index of Multiple Deprivation (IMD)) and clinical information (e.g. tumour grade, size, number of tumours, metastases, routes to diagnosis and treatment). These data will enable examination of inequalities in the utilisation of targeted therapies across the cancers of interest.
• Hospital Episode Statistics (Linked Admitted Care - Inpatient) – necessary to determine specific comorbidities and to see if surgery receipt is within 12 months of systemic therapy.
• Hospital Episode Statistics (Linked - Outpatient) – necessary to determine specific comorbidities.
• Systemic Anti-Cancer Therapy (SACT) Registration Database – necessary to provide information on targeted treatment administered to persons diagnosed with a cancer of interest. These data will be used to determine associations in targeted therapy and/or immunotherapy utilisation with demographic and clinical data listed in the cancer registrations dataset.
• Cancer Waiting Times (Treatment Only) – necessary to provide information on whether patients were discussed at multi-disciplinary team (MDT) meeting.
• Somatic and Molecular Dataset – necessary to provide information on whether predictive biomarker testing occurred for persons diagnosed with a cancer of interest. This data will be used to determine associations of targeted therapy and/or immunotherapy utilisation in instances where a predictive biomarker test is a prerequisite treatment utilisation. Hence assessing the role of testing as a barrier to treatment access.
• National Lung Cancer Audit (NLCA) – necessary to determine smoking, performance, and Estimated glomerular Giltration Rate (EGFR) status of lung cancer patients in this analysis.
The level of the Data will be:
• Pseudonymised
Data will be minimised as follows:
• Limited to the conditions relevant to the study identified by specific ICD-10 codes: (Breast cancer ICD-10 50); lung cancer (ICD-10 C34); stomach cancer (ICD-10 C16); colorectal cancer (ICD-10 C18 - C21); liver cancer (ICD-10 C22); pancreas cancer (ICD-10 C25); cervix cancer (ICD-10 C53); endometrium cancer (ICD-10 C54); ovary cancer (ICD-10 C56); melanoma (ICD-10 C43); and kidney cancer (ICD-10 C64-C65).
• Limited to data between patients with a date of diagnosis from 01/01/2012 and/or earliest available date available for that dataset (e.g. Somatic and Molecular Dataset) to the latest date available at the time of the data extraction.
• Limited to the following geographic areas: England only.
• Only requesting data fields required for analysis.
Newcastle University 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 personal 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 interested 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, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.
The funding is provided by National Institute for Health and Care Research (NIHR). The funding is for the Newcastle Patient Safety Research Collaboration (PSRC) and is not specifically limited to the project described.
The funder(s) will have no availability to suppress or otherwise limit the publication of findings.
Data will be accessed by:
• Substantive employees of Newcaslte University
• Undergraduate, Masters or PhD students enrolled 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 [organisation’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 Public and Patient Involvement group is involved in the project. They helped refine the purpose of the research and strongly supported the collection of the data for the purposes described above, and were keen that research on these drugs should include all cancer sites for which the drugs are used.
Where individuals have opted out of disease registration by the National Disease Registration Service (NDRS), their data has been permanently removed from the registry and therefore will not be disseminated under this Data Sharing Agreement (DSA). https://digital.nhs.uk/ndrs/patients/opting-out
Processing activities
Not stated in the previous version; added here.
No data will flow into NHS England for the purposes of this Data Sharing Agreement (DSA).
NHS England will provide the relevant records from Cancer Registration, Hospital Episode Statistics (Admitted Care - Inpatients), HES (Outpatients), Systemic Anti-Cancer Therapy Dataset (SACT), Cancer Waiting Times (Treatment Only), the Somatic and Molecular Dataset, and National Lung Cancer Audit (NLCA) to Newcastle University.
The Data will:
- contain 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.
The Data will not be transferred to any other location.
The Data will be stored on servers at Newcastle University.
Newcastle University uses offsite back-up services provided by Pulsant.
The Data will be accessed on site at the premises of Newcastle University.
The Data will be accessed by authorised personnel via remote access.
Newcastle University confirms and will provide evidence upon audit by NHS England that access via remote devices 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;
- Personnel are both prohibited and technically prevented from downloading or copying NHSE data to local devices;
- 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 agreement) 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 only. The data will not leave England at any time.
Access is restricted to employees or agents of Newcastle University 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.
There will be no requirement and no attempt to reidentify individuals when using the Data.
Researchers from the Population Health Sciences Institute, Newcastle University will analyse the Data for the purposes described above.
Expected output
The anticipated outputs from this extension request are (i) further publications in peer-reviewed scientific journals and (ii) dissemination of results via conference presentations and associated abstracts. Outputs will cover topics relating to inequalities in lung and breast cancers across the diagnosis, treatment, and outcomes pathway. The primary focus of the project is treatment utilisation and we report below outcomes to date in relation to this. Areas that will be investigated in the extension will include inequalities in determinants of treatment (e.g. stage, route to diagnosis) and inequalities following treatment (e.g. net and cancer-specific survival); these are therefore the topics we expect future outputs will focus on.
The expected outputs of processing will be:
As this data request is for a project extension, there have already been a number of outputs from the initial data request. These are as follows:
Submissions to peer reviewed scientific journals (on-going):
Conference presentations:
• Socio-demographic disparities in HER2+ breast cancer trastuzumab receipt: An English population-based analysis, in prep (anticipated to be published in 2024). Target journal: Cancer Epidemiology, Biomarkers and Prevention.
Norris. R.P. et al. (November 2021) Fair Treatment for All? Socio-economic inequalities in HER2+ breast cancer treatment utilisation, oral presentation and poster as the NCRI Virtual Festival.
• Routes to diagnosis in NSCLC - do socio-demographics matter? An English population-based study, in prep (anticipated to be published in 2024). Target journal: Lung Cancer.
Norris. R. P et al. (August 2022) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at IASLC 2022 World Conference on Lung Cancer, Vienna, Austria.
• Paper exploring survival and NSCLC novel treatment receipt.
Peer-reviewed scientific publications:
• Paper exploring inequalities in treatment receipt in oestrogen receptor positive breast cancer.
Two papers are in preparation for publication which report the results of the breast and lung cancer analyses conducted on the dataset already provided. These papers explore socio-economic inequalities in the utilisation of novel anti-cancer therapies. The lung manuscript has been submitted to the Journal of Thoracic Oncology and is under review. The breast manuscript is intended for submission to either the Lancet Oncology, the British Journal of Cancer or the European Journal of Cancer. It is anticipated that both publications will be available to read in 2023.
Submission to peer-reviewed scientific journals for new analyses specialising in novel treatment inequalities. Papers will be on:
Other:
• Inequalities over time.
The data obtained in the initial request was used as part of Ruth Norris’s PhD. The thesis has now been submitted to Newcastle University and the viva examination conducted. The thesis, titled “Socio-economic inequalities in the utilisation of novel anti-cancer therapies”, will be available in Newcastle University's dissertation repository following completion of minor corrections (likely timescale of 6 months – early 2023).
• Inequalities in novel versus targeted treatments.
It is also anticipated that there will be dissemination of the project’s outputs to a wider, lay audience. This is likely to take on the format of blog posts (e.g. through the Centre for Translational Research in Public Health FUSE blog page). Early thesis doctoral work on the project already used this communication channel for increasing the readership of the systematic review’s findings (see: https://fuseopenscienceblog.blogspot.com/2020/10/can-your-education-income-or-even-your.html). The target date for such blog post outputs is 2023.
• Inequalities by cancer site.
Outputs report only aggregate level data. For the breast cancer analysis, we report data on 40,179 women with HER2+ breast cancer of which 17,674 women utilised the novel anti-cancer therapy trastuzumab. The lung analysis reflects a NSCLC population (195,387 patients) of which 9,854 patients utilised a novel anti-cancer therapy (targeted treatment, biological and/or immunotherapy). Small numbers have been suppressed where necessary, for example by using wider age group bands. Finally, missing, and unknown detail was retained and levels of this are (and will be) reported in published analyses.
• Inequalities in drug class.
It is intended to disseminate the outputs to as wide an audience as possible (researchers, clinicians, patients and the public). Publication in open access journals is preferred in order to enable outputs to be free to users to access and there is funding available for publication by such means through Ruth Norris’s PhD funding. Any blog post outputs will also be free to access.
• Inequalities in survival.
• Presentations to Newcastle University’s colleagues at internal events.
• Presentations at conferences e.g. Social Science and Medicine Annual Scientific Meeting.
• Communications in published abstracts e.g. Journal of Epidemiology and Community Health.
• Publication in blog posts e.g. through the Centre for Translational Research in Public Health FUSE blog page; NIHR Newcastle Patient Safety Research Collaboration Blog.
Outputs will cover topics relating to inequalities in cancers of interest across the diagnosis, treatment, and outcomes pathway. The primary focus of the project is treatment utilisation. Areas that will be investigated in the extension will include inequalities in determinants of treatment (e.g. stage, route to diagnosis, waiting times, receipt of predictive biomarker testing), inequalities following treatment (e.g. net and cancer-specific survival) as well as an investigation of how inequalities have changed over time (i.e. before, during and post the COVID-19 pandemic).
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.
Outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals with open access to take advantage of Newcastle University’s arrangement with publishers) e.g. British Journal of Cancer; European Journal of Cancer.
• Submit abstracts to conferences e.g. Social Science and Medicine.
• Blogs e.g. Centre for Translational Research in Public Health FUSE blog; NIHR Newcastle Patient Safety Research Collaboration’s Blog.
The target dates for production and dissemination of the outputs are as follows:
• Submissions to peer reviewed scientific journals anticipated in 2026-2028 (medium to longer term).
• Presentations at Newcastle University’s internal events anticipated throughout 2025-2026 (short to medium term).
• Presentations at conferences anticipated in 2026 (medium term).
• Communications in published abstracts anticipated in 2026 (medium term).
• Publication in blog posts anticipated in 2026-2028 (medium to long term).
Expected measurable benefits
The initial ODR1819_325 application was written prior to the “expected measurable benefits statement” question. This update therefore is an amendment of the lay summary section of the original ODR Data Request Form (April 2018 v4.0) question: “describe in plain English how PHE data will be used in the delivery of the project”.
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 the care, treatment, and experience of patients diagnosed with cancers where targeted treatments and/or immunotherapies are licenced.
From the initial ODR application:
The use of the data could:
The primary impact of this project is expansion of knowledge regarding the scale of present UK health inequalities in light of recent medical advancements. The main individuals considered to benefit from this work are patients, hence this project is in the public interest. If new novel anti-cancer therapies (targeted treatments, biologicals and immunotherapies) offer opportunity for increased tumour responses, reduced toxic side effects and improved survival (as it has been suggested for these therapies) then drug access should be equitable. This study is investigating – for the first time - whether there are inequalities in receipt of these treatments. If such inequalities are observed, this provides powerful evidence to support the development of strategies to improve equity, thus benefiting those patients who were less likely to have been treated previously.
o Generate contemporary understanding of inequalities in cancers with targeted and/or immunotherapies licensed nationally across the diagnosis, treatment, and outcomes pathway. This aligns with the All Party Parliamentary Group of Cancer’s Inquiry into Inequalities in Cancer (i.e. need for more data and further research promotion into inequality causes and improved cancer experiences).
The secondary impact is promotion of further research into underrepresented, vulnerable and disadvantaged groups. For example, clinical trials data currently lacks representation of elderly patients, despite cancer primarily being a disease of old age. Capturing evidence of real world prescribing practice for such populations is important for identifying where gaps exist and stimulating research or changes in practice to fill these gaps. This will, in turn, benefit patients.
o Understand inequalities in the determinants of treatment (e.g. stage, route to diagnosis) and inequalities following treatment (e.g. net and cancer-specific survival).
Finally, with respect to the health and social care sector, cancer has a significantly detrimental impact on national economics and society as a whole, so studies (such as this one), which have the potential to lead a reduction in inequalities in cancer treatment can benefit the economy and society. Cancer organisations, researchers, the NHS and governments all have an invested role in prioritising inequality reduction as a matter of social justice. The wider public will benefit from the expansion of knowledge regarding the scale of health inequalities in cancer care in England. Understanding these inequalities is the first step in starting to address them. An understanding of local inequity will also be provided and will arm primary care trusts and policy makers with an appreciation of how best to serve the needs of their populations. Furthermore, the results will be important for ensuring that future policies and interventions do not exacerbate inequalities further.
o Help the system to better understand the health and social care needs of cancer populations with licenced targeted therapies and/or immunotherapies regarding treatment inequalities, the impact of early diagnosis and survival outcomes from receiving/not receiving treatment. Specifically, this data extension could identify how deprivation and outcomes in such cancers of interest (both pre- and post-treatment) are linked.
Combined, the project addresses the priorities outlined in the All Party Parliamentary Group on Cancer’s Inquiry into Inequalities in Cancer (more data, further research promotion into inequality causes and improved cancer experiences). This is in addition to addressing innovative drug and molecular diagnostic access as presented in the Cancer Strategy for England documentation (2015 – 2020). Furthermore, the work considers the NHS’ Long Term Plan which aims to help patients age well (2019). Finally, this project is timely given the re-examination of the public health agenda in the updated Marmot Review recommendations (Health Equity in England: The Marmot Review 10 Years on; 2020).
o Advance the promotion of research into underrepresented, vulnerable, and disadvantaged groups which are not always represented in clinical trials data i.e. those resident in areas of high deprivation.
The project’s outputs will achieve the stated purposes and thus the benefits of processing by:
o Lead to the identification of a need to improve novel treatments access for all patients (including those residents in deprived regions in England) along with health and care system design that improves health and care equity outcomes.
(i) Describing the extent to which there are treatment inequalities based on patients’ socio-economic status.
o Increase awareness of inequalities in cancers with licenced targeted therapies and/or immunotherapies and the pathways for health professionals involved in cancer diagnosis and treatment.
(ii) Reporting whether inequalities in novel anti-cancer therapy access are associated with an impact on patient survival.
o Advance the understanding of national trends in targeted therapy and/or immunotherapy access needs.
(iii) Exploring reasons for the treatment inequalities (e.g. by investigating the extent to which there are inequalities in determinants of treatment); this may help shed light on where interventions to address inequalities need to be targeted.
o Explore what has happened in the time since 2017 and the impact of COVID-19 pandemic on targeted therapy and/or immunotherapy utilisation. This will provide the first robust assessment of the impact of the COVID-19 pandemic on treatment inequalities and would highlight any learning points for future pandemic planning and implications of such an event on novel treatment access.
(iv) Highlighting further inequalities in lung and breast cancers across the diagnosis and treatment pathway.
o Inform health services for improving equity of treatment access. For example, this research could highlight where and in which cancers effective interventions could have the most impact for tacking inequalities.
Dissemination of the results of this work (peer-reviewed publications, conference presentations, lay summaries) are particularly beneficial for raising the issues of inequalities in disadvantaged groups to wider clinical and lay audiences. It is hoped that doing so will promote action for change. The magnitude of this impact is likely to be large. For example, from the work conducted to date on this dataset and the scope of inequalities reported by deprivation, it is possible to estimate crudely, that should inequalities be eradicated (i.e. the rate of treatment utilisation in the least deprived patients be applied to all other IMD quintiles) a further 41 patients would be anticipated to receive trastuzumab in HER2+ breast cancer out of a total population of 40,179 patients and a further 3,205 patients would utilise any novel anti-cancer therapy in a NSCLC context out of a population of 195,387.
o Inform decisions on how to effectively allocate and evaluate funding according to health inequality needs. Providing a baseline against which any future changes can be evaluated.
The actions leading up to the benefit will be carried out in the first instance by the data controller. It is anticipated that the benefits will be measured by project outputs (e.g. publications) and longer term by further research into why these treatment inequalities exist along with any efforts to minimise their existence in the first instance. Some benefits are expected to be delivered by the extension end date (31st March 2025); others will occur beyond this date (given the sometimes, extended timeline for review, revision, and publication of scientific papers).
o Provide a mechanism for checking the quality of care e.g. identifying areas of good practice to learn from and areas of poorer practice which need to be addressed.
o Provide aggregated data to health professionals, service providers, and policy-makers to inform national strategies to address inequalities and to minimise any current inequality widening.
o Support research within the Population Health Science Institute (PHSI) at Newcastle University aligned to the inequalities theme and NIHR Newcastle Patient Safety Research Collaboration seeking to research health inequalities in patients’ resident in areas of disadvantage.
o Support knowledge creation or exploratory research (and the innovations and developments that might results from that exploratory work).
o Cost saving for the NHS potentially relating to early cancer detection, appropriate treatment access, and improved survival (ongoing depending on the outcomes of the research and the extent of inequalities observed).
o Advance research into better understanding what influences treatment decision-making and how this may explain inequalities in treatment.
o Understand whether survival benefits seen in trials of expensive targeted treatments and/or immunotherapies translate into similar benefits in real-world practice.
Dissemination of findings has no direct benefit to those patients already diagnosed with cancers where targeted treatments and/or immunotherapies are currently in use. Benefits instead relate to future cancer diagnoses where patients may be candidates for targeted therapies and/or immunotherapies. This is because long term initiatives from this work could: reduce inequalities in access to novel cancer treatments and increase the proportion of patients receiving optimal novel treatment directed care. In return, this may also lead to improved outcomes (e.g. survival).
The magnitude of the impact is likely to be large. This is because many patients are likely impacted by any inequalities in treatment provision. For example, from the work conducted to date on this dataset and the scope of inequalities reported by deprivation, it is possible to estimate crudely, that should inequalities be eradicated (i.e. the rate of treatment utilisation in the least deprived patients be applied to all other IMD quintiles) a further 41 patients would be anticipated to receive trastuzumab in HER2+ breast cancer out of a total population of 40,179 patients and a further 3,205 patients would utilise any novel anti-cancer therapy in a NSCLC context out of a population of 195,387.
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 individuals care practitioners charged with making policy decisions for or within the NHS particularly regarding treatment decisions in relation to cancer patients where target treatments and/or immunotherapies are licensed.
Listed benefits will be achieved through collaboration of the research team with health professionals, service providers, and policy makers.
Engagement and interest in the findings will raise awareness of treatment disparities and mark the first step towards tackling inequalities in treatment provision.
Benefits reported
The benefits yielded to date from the project so far have been as follows. The work sheds light on the scale of health inequalities present in England despite recent medical advances. This is the first step towards starting to address this inequity. It has found that women residing in the most deprived areas in England were 8% (95% CI 15%, 1%) less likely to utilise trastuzumab compared to women residing in the least deprived areas. In contrast, significant inequalities were found for NSCLC novel anti-cancer therapy, with patients resident in the most deprived areas being 46% less likely to utilise these therapies compared to those resident in the least deprived areas. It was also observed that deprivation associations were stronger with targeted therapies compared to immunotherapy utilisation. Overall, the work has concluded that there is a reduced likelihood of treatment utilisation with a lower socio-economic status (SES) regardless of the free at the point of care service provided in the English publicly funded healthcare system. As with conventional cancer treatments and despite advances in care, it appears that low SES is a potential barrier to fair treatment utilisation in the context of these novel treatments. These findings have furthered understanding of the real-world use of novel anti-cancer therapies in England. Current work on this project has therefore provided evidence of real world prescribing practice and has identified areas for further research (reasons for why there are these inequalities, if inequalities in biomarker testing is the barrier to work in this area and finally, what actions can be taken moving forward to minimise the impact of inequalities on cancer treatment moving forward). This provides the foundation for further work exploring whether or not inequalities in access to treatment have resulted in variations in survival.
The previous yielded benefits achieved to date are as follows:
The data has also been used to successful enable the PhD student to produce novel work at the standard appropriate for awarding of a Doctor in Philosophy.
• Publications in peer reviewed scientific journals:
• Norris R.P. et al. (2023) Socio-economic inequalities in novel NSCLC treatments during the era of tumour biomarker guided therapy: A population-based cohort study in a publicly funded healthcare systems, Journal of Thoracic Oncology, 18(8); 990-1002; https://doi.org/10.1016/j.jtho.2023.04.018.
This piece of work found significant inequalities in NSCLC novel anti-cancer therapy utilisation, with patients’ resident in the most deprived areas being 55% less likely to utilise these therapies compared to those residents in the least deprived areas. It was also observed that deprivation associations were stronger with targeted therapies compared to immunotherapy utilisation. Overall, the work has concluded that there is a reduced likelihood of treatment utilisation with a lower SES regardless of the free at the point of care service provided in the English publicly funded healthcare system. As with conventional cancer treatments and despite advances in care, it appears that low SES is a potential barrier to fair treatment utilisation in the context of these novel treatments. These findings have furthered understanding of the real-world use of novel anti-cancer therapies in England. Current work on this project has therefore provided evidence of real-world prescribing practice and has identified areas for further research (reasons for why there are these inequalities, exploring inequalities in biomarker testing, and finally, actions that can be taken moving forward to minimise the impact of inequalities on cancer treatment). This provides the foundation for further work exploring whether inequalities in access to treatment have resulted in variations in survival.
Published abstracts:
• Norris R.P. et al. (2023) Routes to diagnosis in lung cancer – do socio-demographics matter? An English population-based study, Journal of Epidemiology and Community Health, 77(Supp 1): A21.1-A21, http://dx.doi.org/10.1136/jech-2023-SSMabstracts.41.
• Norris R.P. et al (2023) Socio-economic inequalities in novel NSCLC treatments during the era of tumour biomarker guided therapy: a population-based cohort study, Journal of Epidemiology and Community Health, 77(Supp 1): A21-A22, https://jech.bmj.com/content/77/Suppl_1/A21.2.
• Norris R.P. et al (2023) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based cohort study, J. Thorac Oncol. 17(9): S5-S6: https://www.jto.org/article/S1556-0864(22)00358-6/fulltext.
Presentations at the following conferences:
• Norris. R.P. et al. (November 2021) Fair Treatment for All? Socio-economic inequalities in HER2+ breast cancer treatment utilisation, oral presentation, and poster as the NCRI Virtual Festival.
This work found that women residing in the most deprived areas in England were 8% less likely to received trastuzumab compared to women residing in the least deprived areas between 2012-2017.
• Norris. R.P. et al. (August 2022) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at IASLC 2022 World Conference on Lung Cancer, Vienna, Austria.
• Norris. R.P. et al. (September 2023) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at Social Science and Medicine Annual Scientific Meeting 2023, Newcastle, England.
• Norris R.P. et al. (September 2023) Routes to diagnosis in lung cancer – do socio-demographics matter? An English population-based study, Social Science and Medicine Annual Scientific Meeting 2023, Newcastle, England.
This work has shown that during 2012-2016, one third of lung cancer patients presented as emergencies. Routes to diagnosis were subject to distinct socio-demographic patterning (older, female, non-white ethnicity, resident areas of greater deprivation, with a SCLC tumour histology and multiple comorbidities) were more likely to present as emergencies. In contrast, two week wait patients were aged 60-80 years old, of white ethnicity, residents in areas of greater deprivation and tended to have no comorbidities.
Thesis publication:
• R.P. Norris (2023) Socio-economic inequalities in the utilisation of novel anti-cancer therapies, https://theses.ncl.ac.uk/jspui/handle/10443/6049.
Publication of blog posts:
• R.P. Norris (2020) Can your education, income or even your job affect your chances of receiving newer cancer treatments?
DARS-NIC-656847-K4L8H-v1.3 3 February 2023 to 31 March 2024
- Title
- Investigating inequalities in utilisation of targeted therapies (ODR1819_325)
- Commercial
- No
- Sublicensing
- No
- Datasets
- 4
- Files released
- 0
Datasets: NDRS Cancer Registrations; NDRS Linked Cancer Waiting Times (Treatments only); NDRS Linked HES APC; NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
Objective for processing
Newcastle University will access cancer registration data collected by the National Cancer Registration and Analysis Service (NCRAS; the national cancer registry in England) on patients with lung and breast cancer. They will access information about each patient, their tumour and the treatment that they have received. This will include information such as sex, ethnicity, cause of death and how they were diagnosed if they have other medical conditions, as well as their socio-economic background. This data will be analysed by Newcastle University to find out:
1. What percentage of patients received targeted therapy as part of their cancer treatment and how does this change by type of cancer, when the treatment is given and the geographical location of the patient.
2. If the use of targeted therapy is different depending upon a patient's social and economic background (based upon where they live)
3. If the use of targeted therapy is different depending upon a patient's age when they are diagnosed.
4. What percentage of breast cancer patients have hormone receptor testing ( a test to see how the cells in the body receive a hormone to change how often they divide) and if the types of people receiving these tests are different depending on their age and background
5. If the use of targeted therapies helps more people to survive from cancer, and if it does, whether this increased survival rate is the same for all ages and social or economic backgrounds.
Expected output
The anticipated outputs from this extension request are (i) further publications in peer-reviewed scientific journals and (ii) dissemination of results via conference presentations and associated abstracts. Outputs will cover topics relating to inequalities in lung and breast cancers across the diagnosis, treatment, and outcomes pathway. The primary focus of the project is treatment utilisation and we report below outcomes to date in relation to this. Areas that will be investigated in the extension will include inequalities in determinants of treatment (e.g. stage, route to diagnosis) and inequalities following treatment (e.g. net and cancer-specific survival); these are therefore the topics we expect future outputs will focus on.
As this data request is for a project extension, there have already been a number of outputs from the initial data request. These are as follows:
Conference presentations:
Norris. R.P. et al. (November 2021) Fair Treatment for All? Socio-economic inequalities in HER2+ breast cancer treatment utilisation, oral presentation and poster as the NCRI Virtual Festival.
Norris. R. P et al. (August 2022) Socio-economic inequalities in NSCLC treatment during the era of tumour biomarker guided therapy: a population-based study, oral presentation at IASLC 2022 World Conference on Lung Cancer, Vienna, Austria.
Peer-reviewed scientific publications:
Two papers are in preparation for publication which report the results of the breast and lung cancer analyses conducted on the dataset already provided. These papers explore socio-economic inequalities in the utilisation of novel anti-cancer therapies. The lung manuscript has been submitted to the Journal of Thoracic Oncology and is under review. The breast manuscript is intended for submission to either the Lancet Oncology, the British Journal of Cancer or the European Journal of Cancer. It is anticipated that both publications will be available to read in 2023.
Other:
The data obtained in the initial request was used as part of Ruth Norris’s PhD. The thesis has now been submitted to Newcastle University and the viva examination conducted. The thesis, titled “Socio-economic inequalities in the utilisation of novel anti-cancer therapies”, will be available in Newcastle University's dissertation repository following completion of minor corrections (likely timescale of 6 months – early 2023).
It is also anticipated that there will be dissemination of the project’s outputs to a wider, lay audience. This is likely to take on the format of blog posts (e.g. through the Centre for Translational Research in Public Health FUSE blog page). Early thesis doctoral work on the project already used this communication channel for increasing the readership of the systematic review’s findings (see: https://fuseopenscienceblog.blogspot.com/2020/10/can-your-education-income-or-even-your.html). The target date for such blog post outputs is 2023.
Outputs report only aggregate level data. For the breast cancer analysis, we report data on 40,179 women with HER2+ breast cancer of which 17,674 women utilised the novel anti-cancer therapy trastuzumab. The lung analysis reflects a NSCLC population (195,387 patients) of which 9,854 patients utilised a novel anti-cancer therapy (targeted treatment, biological and/or immunotherapy). Small numbers have been suppressed where necessary, for example by using wider age group bands. Finally, missing, and unknown detail was retained and levels of this are (and will be) reported in published analyses.
It is intended to disseminate the outputs to as wide an audience as possible (researchers, clinicians, patients and the public). Publication in open access journals is preferred in order to enable outputs to be free to users to access and there is funding available for publication by such means through Ruth Norris’s PhD funding. Any blog post outputs will also be free to access.
Benefits reported
The benefits yielded to date from the project so far have been as follows. The work sheds light on the scale of health inequalities present in England despite recent medical advances. This is the first step towards starting to address this inequity. It has found that women residing in the most deprived areas in England were 8% (95% CI 15%, 1%) less likely to utilise trastuzumab compared to women residing in the least deprived areas. In contrast, significant inequalities were found for NSCLC novel anti-cancer therapy, with patients resident in the most deprived areas being 46% less likely to utilise these therapies compared to those resident in the least deprived areas. It was also observed that deprivation associations were stronger with targeted therapies compared to immunotherapy utilisation. Overall, the work has concluded that there is a reduced likelihood of treatment utilisation with a lower socio-economic status (SES) regardless of the free at the point of care service provided in the English publicly funded healthcare system. As with conventional cancer treatments and despite advances in care, it appears that low SES is a potential barrier to fair treatment utilisation in the context of these novel treatments. These findings have furthered understanding of the real-world use of novel anti-cancer therapies in England. Current work on this project has therefore provided evidence of real world prescribing practice and has identified areas for further research (reasons for why there are these inequalities, if inequalities in biomarker testing is the barrier to work in this area and finally, what actions can be taken moving forward to minimise the impact of inequalities on cancer treatment moving forward). This provides the foundation for further work exploring whether or not inequalities in access to treatment have resulted in variations in survival.
The data has also been used to successful enable the PhD student to produce novel work at the standard appropriate for awarding of a Doctor in Philosophy.
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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March 2023 —
first listed. 1 version: DARS-NIC-656847-K4L8H-v1.3
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December 2023
Renamed Applicant organisation: Newcastle University now named University of Newcastle upon Tyne. Not counted as a change.Renamed Data controllers: Newcastle University now named University of Newcastle upon Tyne. Not counted as a change.
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October 2024
1 version added: DARS-NIC-656847-K4L8H-v2.4
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-656847-K4L8H, “Investigating inequalities in utilisation of targeted therapies”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-656847-k4l8h/ (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-656847-K4L8H to see the original rows.