NHS Digital Data Release Register - reformatted
Norfolk And Norwich University Hospital projects
4 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).
A national retrospective cohort review of the epidemiology of lentigo maligna in England from 2013 to 2023. — DARS-NIC-727732-M8C2N
Opt outs honoured: No (Excuses: Does not include the flow of confidential data)
Legal basis: Health and Social Care Act 2012 s261(2)(a)
Purposes: No (NHS Trust Site)
Sensitive: Sensitive
When:DSA runs 2025-06 – 2027-06 2025.11 — 2025.11.
Access method: One-Off
Data-controller type: NORFOLK AND NORWICH UNIVERSITY HOSPITALS NHS FOUNDATION TRUST
Sublicensing allowed: No
AGD/predecessor discussions: AGD minutes - 17th October 2024 final.pdf
Datasets:
- NDRS Cancer Registrations
Type of data: Anonymised - ICO Code Compliant
Objectives:
Norfolk & Norwich University Hospitals NHS Foundation Trust requires access to the NHS data for the purpose of the below research project:
National retrospective cohort review of the epidemiology of lentigo maligna in England from 2013 to 2023.
The following is the summary of the aims of the research programme provided by or on behalf of the Norfolk & Norwich University Hospitals NHS Foundation Trust: -
- To examine the epidemiological trends of Lentigo Maligna (LM), a type of melanoma in situ, within the English population from 2013 to 2023.
- The study aims to assess the incidence and survival rates of LM over this period and compare these trends to other types of melanoma in situ.
- The research seeks to explore how various factors, such as age, gender, ethnicity, deprivation, associated malignancy, immunosuppression, tumor site, laterality, stage at diagnosis, treatment received, and geographical region, impact these trends.
- Additionally, the study aims to determine the risk of LM progressing to lentigo maligna melanoma (LMM) and malignant melanoma (MM) and to calculate survival rates for these patient cohorts. The findings of this research is intended to help patients and clinicians make more informed decisions about managing LM based on the most recent data.
The following NHS data will be accessed.
- NDRS Cancer Registration Data Set - necessary to provide information on the national registration of melanoma in situ (and particularly LM) and patient characteristics.
The level of the Data will be pseudonymised.
The Data will be minimised as follows;
- All cancers for patients with D03/87442 and C43/87443 between 2013 and 2023.
- All additional cancers for these patients from 1995 onwards
Norfolk and Norwich University Hospitals NHS Foundation Trust is the research sponsor and controller, responsible for ensuring the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller.
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
This processing is in the public interest because 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 the Department of Dermatology, Norfolk and Norwich University Hospital. The funding is specifically for the project described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Data will only be accessed by Norfolk and Norwich University Hospitals NHS Foundation Trust substantive employees, trained in data protection and confidentiality.
Norfolk and Norwich University Hospitals NHS Foundation Trust plan to discuss findings with patients prior to preparing manuscripts and publishing outcomes.
Expected Benefits:
The findings of this research study are expected to contribute to evidence-based decision-making for policy-makers, local decision makers such as Doctors, and patients to inform best practice to improve the care, treatment and experience of health care users associated with LM, leading to better public health strategies and resource allocation.
It is hoped that the research will enable patients to gain a clearer understanding of their condition and the factors that should be considered when making decisions about managing their lesions.
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 practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to patients suffering from LM.
The findings will be disseminated via a journal publication and conference presentation to raise awareness of clinicians and the public. Posters will also be made available in clinical areas of the NNUH Department of Dermatology for patient education. If the findings warrant further attention, NNUH will discuss with relevant charities and patient support groups that may help in dissemination and patient education (e.g. Melanoma UK, Cancer Research UK).
Outputs:
The expected outputs of the processing will be:
The study will produce the most comprehensive and up-to-date epidemiological data on Lentigo Maligna (LM) in Europe, specifically focusing on its incidence and long-term survival trends in England.
The results will provide evidence-based insights that could inform the public and policy makers about the outcomes associated with LM, leading to better public health strategies and resource allocation.
The findings will potentially shape future guidelines published by dermatological associations on the management of melanoma in situ, particularly LM.
Patients will gain a clearer understanding of their condition and the factors that should be considered when making decisions about managing their lesions, particularly in older adults who are often underrepresented in healthcare decision-making.
The results will be disseminated to clinicians and patients through publication in peer-reviewed journals, presentations at conferences, and distribution of educational materials such as posters and patient information leaflets at the Norfolk and Norwich University Hospitals NHS Foundation Trust
The outputs will not contain NHS England Data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels
Through publication in a peer reviewed scientific journal
Posters displayed at clinical areas at the NNUH Department of Dermatology
Patient Information leaflets available at the NNUH Department of Dermatology
Public events such as conference (this is to be confirmed as NNUH cannot have this information until the data is analysed). NNUH will be aiming for large dermatology conferences such the annual national BAD meeting, the European EADV meeting or the American AAD meeting.
NNUH anticipate the analysis to take 3-6 months and manuscript preparation a further 3 months; NNUH will aim for journal publication and conference dissemination 9 months to 1 year after accessing the data (around Q2 2026).
Processing:
No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).
NHS England will provide the relevant records from the NDRS Cancer Registration Data set to Norfolk & Norwich University Hospitals NHS Foundation Trust.
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 Norfolk & Norwich University Hospitals NHS Foundation Trust.
The Data will be accessed by authorised personnel via remote access.
The Controller(s) must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.
For remote access:
- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;
- Access controls granting users the minimum level of access required are in place;
- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;
- Multifactor authentication (MFA) is required for remote access;
- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;
- All remote access is undertaken within the scope of the organisations DSPT (or other security arrangements as per this DSA) and complies with the organisations 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
Access is restricted to employees of Norfolk and Norwich University Hospitals NHS Foundation Trust who have authorisation from the chief 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.
Analysts from the Norfolk & Norwich University Hospitals NHS Foundation Trust will process the Data for the purposes described above.