NHS Digital Data Release Register - reformatted

Hampshire Hospitals NHS Foundation Trust projects

3 data files in total were disseminated unsafely (information about files used safely is missing for TRE/"system access" projects).

Determine mode of presentation, route to diagnosis, updated incidence, prevalence and survival of patients with Neuroendocrine Neoplasia, calculating total costs of care (ODR2021_020) — DARS-NIC-656877-H3Z0P

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant (Does not include the flow of confidential data)

Legal basis: Health and Social Care Act 2012 – s261(2)(a)

Purposes: No (NHS Trust)

Sensitive: Sensitive

When:DSA runs 2024-01-22 — 2026-01-21

Access method: One-Off


Sublicensing allowed: No


  1. NDRS Cancer Registrations
  2. NDRS Linked DIDs
  3. NDRS Linked HES AE
  4. NDRS Linked HES APC
  5. NDRS Linked HES Outpatient
  6. NDRS National Radiotherapy Dataset (RTDS)
  7. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)


Hampshire Hospitals NHS Trust (HHFT) requires access to NHS England data for the purpose of the following research project: Determine mode of presentation, route to diagnosis, updated incidence, prevalence, and survival of patients with Neuroendocrine Neoplasia, calculating total costs of care.

The data has already been released and this application is for an extension and updated incidence and survival data previously disseminated.

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

• Estimate the baseline overall survival and health care costs for future evaluations of cost-effectiveness of treatments for advanced or metastatic NETs
• Determine mode of presentation: e.g. A&E, GP or hospital clinic, and route to diagnosis
• Determine time from first presentation e.g. to A&E to diagnosis of NEN
• Determine four-year age-standardized incidence rates and prevalence, comparing to historic rates
• Determine three-year overall survival including by sex, grade and stage
• Determine effect of socioeconomic status, race and geography on survival and compare with historic data
• Determine the extent of investigation, treatment, and cost of care at initiation, maintenance and terminal phases – time period of data: 1997 – 2018; admission date on HES admitted databases
• Estimate NHS costs of in-patient hospitalisations by socio-economic status, age, gender, race, geography, grade and stage
• Estimate the socio-economic gradient in hospital costs of treatment for NETs across the life course (population-wide costs of inequality)

Neuroendocrine neoplasias (NEN) are a rare type of cancer which are becoming more common year-on-year worldwide. In the most recent data, NEN is now more prevalent than stomach and pancreas cancer.

Over the years, the internationally agreed definition of this type of cancer has evolved to become more sophisticated. In 2017 the World Health Organisation (WHO) updated its classification of NEN which allows people to collect and study the data in more detail. In England, the data is derived from pathology specimens and is held in an anonymised form by Public Health England in the National Cancer Registry and Analysis Service (NCRAS).

Using data from NCRAS, the study team aim to study how common these cancers have become across age groups and also analyse other important factors such as sex, additional health problems, geographic area and deprivation. The study team will look at how people are being diagnosed with the tumours (such as via their GP or via A&E) and how long it takes. Using health economic analysis methods, HHFT can also use the data to calculate the cost of caring for those with NEN in England.

The results of this study will be of interest and provide important information to patients who have the disease, public health departments in the UK and NHS England, NEN multidisciplinary meetings, Neuroendocrine Cancer UK (charitable organisation), medical societies and healthcare professionals.

Much of this data has been studied and many presentations and publications have resulted. The hospital admission data including mode of presentation to hospital as well as the costs involved have not been studied or presented to date.

Datasets requested under this agreement are:
• NDRS Linked Hospital Episode Statistics
o Admitted Patient Care
o Accident & Emergency
o Outpatients
• NDRS Linked Cancer Registration
• NDRS Systemic Anti-Cancer Therapy Dataset (SACT)
• NDRS Linked Diagnostic Imaging Dataset (DID)
• NDRS Radiotherapy Dataset (RTDS)

The level of data will be pseudonymised.

Hampshire Hospitals NHS Trust is the sponsor and 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 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 comes from multiple sources. Current funders include Neuroendocrine Cancer UK - previous funding made available. The funder(s) will have no ability to suppress or otherwise limit the publication of findings.

No extra funding to continue the work described is necessary since it is undertaken by the principal investigator on a voluntary basis as well as junior doctors/ clinical fellows within HHFT.

No external organisations involved.

The CEO of Neuroendocrine Cancer UK (NCUK) and the trustees of the same helped refine the purpose of the research. Several patients with this cancer are members of the board of trustees of NCUK. Many of the findings of the research have been widely discussed and posted onto the patient support group website and presented at patient meetings. NCUK strongly support further research on this data.

In line with the national data opt-out policy, opt-outs are not applied because the data is not Confidential Patient Information as defined in section 251(10) and section 251(11) of the National Health Service Act 2006.

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

Yielded Benefits:

Publications to date ) abstracts and peer-reviewed) Abstracts (8) Epidemiology of neuroendocrine neoplasms (NEN) in England 2012-2018 – Home location, incidence and survival including access to neuroendocrine centres of excellence (CoE) ENETS 2023 - forthcoming in print C Nwoguh, BE White et al Urine 5-HIAA levels and quality-of-life in neuroendocrine neoplasia – Is there an association? ENETS 2023 - forthcoming in print R Chaudhry, BE White et al Urine 5-HIAA levels and quality-of-life in neuroendocrine neoplasia. Is there an association? R Chaudhry, B White et al Endocrine Abstracts 87 2022 Sex differences in survival of neuroendocrine neoplasia in England 1995-2018 BE White et al JOURNAL OF NEUROENDOCRINOLOGY 34, 90-90 2022 Incidence, prevalence and survival of neuroendocrine neoplasia 1995-2018 BE White et al JOURNAL OF NEUROENDOCRINOLOGY 34, 89-89 2022 Incidence, prevalence of survival of neuroendocrine neoplasia in England 1995-2018 BE White et al Endocrine Abstracts 80 1 2021 Sex differences and survival of neuroendocrine neoplasia in England 2012-2018 BE White et al Endocrine Abstracts 80 2021 An audit of psychological distress in the neuroendocrine neoplasia clinic B White et al JOURNAL OF NEUROENDOCRINOLOGY 33, 165-165 2021 Publications (7) Urine 5-HIAA levels and quality-of-life in neuroendocrine neoplasia (forthcoming) R Chaudhry, BE White et al Cancers 15 (6), 1863 2023 Second primary malignancies in patients with a neuroendocrine neoplasm in England B Russell, BE White et al Neuroendocrinology, 1-11 2023 Sex Differences in Survival from Neuroendocrine Neoplasia in England 2012–2018: A Retrospective, Population-Based Study BE White et al Cancers 15 (6), 1863 2023 Incidence and survival of neuroendocrine neoplasia in England 1995–2018: A retrospective, population-based study BE White et al The Lancet Regional Health–Europe 23 12 2022 Goblet cell adenocarcinoma of the appendix: a systematic review and incidence and survival of 1225 cases from an English cancer registry K Palmer, S Weerasuriya, K Chandrakumaran, B Rous, BE White et al Frontiers in Oncology 12 (915028), 3237 8 2022 Primary renal neuroendocrine neoplasms: A systematic literature review, report of four local cases, and original survival analysis of 63 patients from a national registry 2012–2018 SA Paisey, S Weerasuriya, K Palmer, BE White et al Journal of Neuroendocrinology 34 (12), e13215 2022 Incidence and survival of neuroendocrine neoplasia in England 1995–2018: A retrospective, population-based study BE White et al The Lancet Regional Health–Europe 23 12 2022 Update as per latest confirmation report submitted 16 Jan 2024: This project started out as a request from the Neuroendocrine tumour patient charity (now NCUK) to assess the size of the problem of this unique form of cancer. Management of this cancer had been variable and not monitored prior to 2000. Since then, significant progress has been made in all aspects of the care of these patients. Data exists in USA from the SEER database which has been a good source of epidemiological studies, but few complete databases/ registries exist elsewhere. The coding of these cancers has been variable and until recently it was not possible to get a complete picture of numbers for England. We now know that this data does exist in NCRAS and with care, some of the important questions relating to these cancers in England are being elucidated. The first data download was done from Public Health England in 2020. Data was held securely on servers at Hampshire Hospital NHS Trust. The first task was to assess accuracy of the data and calculate incidence trends with prevalence in England. It was noted that coding prior to 2012 was not as accurate as more recently. Hence some analysis was done on the large number (60,000) of cases since 1995 and more detailed analysis done on 2012-2018 data. The analysts proved that the overall incidence had reached 9 cases/100,000 in England so it is hardly considered a rare cancer now. If constrained to one primary site then it will be rare (<6 per100,000). The importance of this is that the clinicians and patients involved in improving patient care can make the case to NHS England that this needs better organised funding. The prevalence is higher than most other Upper GI cancers, hence the large patient numbers in NET multidisciplinary meeting's (mdm), but with rarely any systematic support for NET mdm’s compared to many other cancers. Looking at deprivation, it seems the tumours may be more common in less deprived population, but that poorer survival occurs in those most deprived. This needs to be addressed by healthcare managers. Investigation of sex difference in incidence has not shown large differences but in terms of survival there seem quite large differences in relation to females surviving longer and this needs further investigation. The causes of this are unclear but there have always been questions regarding sex hormone receptors on these tumours and their function is not clear. The relation between NEN and other cancers has been discussed but never conclusively studied on a population basis. The relation to urological cancers is very noticeable in clinical practice. Analysts from KCL looked at the standardised incidence ratios of second cancers in the NEN population and found very significant increases, so high that NEN patients that have survived, or are living with, their NEN need to be involved in screening programmes. Analysts from HHFT looked at cases of Renal NEN in the NCRAS data and compared these with a small series from KCH. These cancers are very rare and data from a national registry are very important to assess outcomes and response to therapy. Analysts have also looked a geographical distribution of the NEN cases in England. No significant “hot spots” have been found although some primary sites have shown trends. There was no relation to pollution, urban vs rural, radiation or powerlines. The analyst plotted the distance from the patients’ home to a centre of excellence (of which there are 11 in England) and found that survival was worse in those living furthest away. This needs confirmation and further investigation. These results are currently unpublished. Analysts also looked at survival of Goblet cell carcinoid in England from NCRAS and reviewed the literature. This was the first registry study of Goblet cell in UK. This is not now considered a NEN but is an adenocarcinoma of the appendix. Many are referred to HHFT which houses the Peritoneal Malignancy Institute. Another analyst is now looking at the effect of right hemicolectomy on the outcomes in goblet cell tumours using the NCRAS data. This is relevant because it is recommended but appears to make little difference. HHFT now have some access to data from SEER and are comparing this with NCRAS. HHFT have shown the sex difference survival data is robust in both sets. This is being presented at the ENETS conference in Vienna in March 2024. Analysts are currently looking at the difference in survival between those presenting as an emergency compared to elective admissions and the latter do better. They are also looking survival after surgery for Lung NEN both in a clinical cohort and also the NCRAS data and SEER data. This would be by far the largest world series looking at outcomes of this relatively common operation. This is in conjunction with the thoracic surgery unit at Guys hospital which may be the largest centre operating on these tumours in UK. Plans for the next tranche of data: relook at incidence and survival with longer follow up and more patients. Having data on the Ki67% which is a marker of aggressiveness of the tumour, will be useful. An analyst is developing nomograms from both NCRAS and SEER which may be used to guide care in the future. HHFT aim to look at factors relating to delay in diagnosis and also delays in treatment which will be more complicated projects. An analyst has written a PhD thesis on this subject and is submitting April 2024 to University of London (KCL). When looking at the original aims and hypotheses of the study most of these have been covered, (appendix 1) except the costing analysis which has been very difficult and not pursued for now.

Expected Benefits:

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

The data may identify regions where the incidence is higher, as well as deprivation groups and age/sex groups that may need extra resources and funding. Access to care may be analysed leading to better use of resources.

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 specific patients.

Clients will need to take action based on the information provided to them in order to realise the potential improvement opportunities. For example, national frameworks for care of Neuroendocrine cancer could be introduced and targeted at the most appropriate regions, depending on incidence.

To optimise the potential public benefits from the use of the data relevant charities or societies been contacted and made aware of what is proposed and NCUK charity will advertise this research to patients and donors.


All data in outputs will be anonymised (since the original data is anonymised) and no reidentification will be possible. The Chief Investigator is aware of avoiding publication of very small individual group characteristics which could potentially lead to a probability of some data representing an individual patient. This will be avoided by only presenting higher level data with aggregates of larger groups.
The expected outputs of the processing will be:
• Submissions to peer reviewed journals every 6 months
• Presentations to UKINETS and ENETS societies
• Presentations at UKINETS and ENETS annual conferences
• Publication of dashboards on Neuroendocrine Cancer UK website

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:
• Journals
• Conference abstracts and proceedings.

Target dates for production and dissemination of the outputs is 2 years from 2023


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 requested datasets to HHFT. 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 HHFT and are not backed up at any other location.

The Data will be accessed by authorised personnel via remote access using a VPN only. Those accessing the data are two junior doctors and retired surgeon and statistician). All of the above have full contracts with HHFT and access the data only via VPN and individual access to the drive on HHFT server. The Data will remain on the servers at HHFT at all times.

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 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 via VPN from secure locations within England/Wales. The data will not leave England/Wales at any time.

Access is restricted to employees of HHFT who have authorisation from the Principal Investigator.

Employees of HHFT are only permitted to access pseudonymised data including information derived from NHS England Data. Such datasets will adhere to the relevant small number suppression rules to minimise the risk of individuals being identified.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality. There will be no requirement and no attempt to reidentify individuals when using the Data. The Data will not be linked with any other data.

Researchers from HHFT will analyse the Data for the purposes described above.