NHS Digital Data Release Register - reformatted

University Hospitals Plymouth NHS Trust projects

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


Demographics and survival outcomes of young colorectal cancer patients. Implications for population-based screening, awareness and management. (ODR1819_262) — DARS-NIC-656843-D8M4Z

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: Non-Sensitive

When:DSA runs 2023-04-13 — 2024-04-12

Access method: One-Off

Data-controller type: UNIVERSITY HOSPITALS PLYMOUTH NHS TRUST

Sublicensing allowed: No

Datasets:

  1. NDRS Cancer Registrations
  2. NDRS Linked HES Outpatient
  3. NDRS National Cancer Diagnosis Audit (NCDA)
  4. NDRS National Radiotherapy Dataset (RTDS)
  5. NDRS Quality of Life of Cancer Survivors in England
  6. NDRS Quality of Life of Colorectal Cancer Survivors in England
  7. NDRS Systemic Anti-Cancer Therapy Dataset (SACT)

Objectives:

This is a request from University Hospitals Plymouth NHS Trust to permit the continued retention of National Disease Registration Service (NDRS) data previously disseminated by Public Health England (PHE) prior to their dissolution in October 2021 under the reference ODR1819_262.

The aim of this project is to look at the demographics (age, sex and gender) and long-term survival of young colorectal cancer patients (defined here as aged 40 years and below) in England. Studying the outcomes and demographics of young colorectal cancer (CRC) patients has become more critical in recent years because there has been an increase in the number of patients with this type of cancer. This project aims to establish baseline data which can be used as a point for comparison on the survival of young CRC patients in England. The project will also compare the outcomes of young colon cancer patients and older cancer patients.

To support this work the University Hospitals Plymouth NHS Trust has previously requested pseudonymised subsets of the following datasets for all patients living in England diagnosed with CRC between 1 January 2000 and 31 December 2014:
- NDRS Cancer Registrations
- NDRS Linked Hospital Episode Statistics (HES) Outpatients
- NDRS Systemic Anti-Cancer Therapy (SACT) Dataset
- NDRS National Radiotherapy Dataset (RTDS)
- NDRS Patient Reported Outcome Measures (PROMS) - Quality of Life in Colorectal Cancer Survivors in England
- NDRS National Cancer Diagnosis Audit (NCDA)
The University Hospitals Plymouth NHS Trust is now requesting to retain the data to support the finalisation of the remaining publications relating to this study. The data being retained is the minimum amount of data necessary to achieve the remaining aims of the study. There is no alternative, less intrusive way of achieving the purposes of this study.

The University Hospitals Plymouth NHS Trust is the sole data controller who also processes the data for the purpose outlined within this Data Sharing Agreement (DSA). The University Hospitals Plymouth NHS Trust has contracted the University of Plymouth to process the data and provide statistical support, the University of Plymouth only process the data under the direction of University Hospitals Plymouth NHS Trust and for the purposes outlined within this DSA.

This project is funded by Bowel Cancer West, beyond providing funds for the project Bowel Cancer West play no role in this application.

Yielded Benefits:

The analysis so far has yielded the following findings which are due for formal publication shortly: - Between 2010 and 2014, 167,501 patients were diagnosed with CRC in England across eight cancer registries. There were more males diagnosed than females in all 8 registries. - The age distribution was fairly similar across all registries. Oxford and Thames (which includes London) regions had the largest proportions of younger patients, with 3.2% of patients less than 40 years of age. The Southwest had the highest proportion of older patients with 27.7% aged 81 and over. The patient population was predominantly of Caucasian ethnicity across all eight regions. Significant differences were observed between socioeconomic deprivation indexes in various geographical regions in England. The Oxford, Southwest and Eastern cancer registries had the lowest proportions of patients with high deprivation; 5.3%, 6.5%, and 7% respectively. In comparison, 25.0% of patients in the Northwest registry had high poverty. - There were variations in the route to the diagnosis of CRC in different cancer registries in the country and the stage of diagnosis of colorectal cancer in various regions in the country, however, there was fairly standard utilisation of cancer treatment services across the country. - The best overall 5-year survival rates were observed in Oxford and Southwest of England with 50.0% and 49.5% respectively. The worst overall 5-year survival was 45.9% in Trent, however, there is a degree of overlap between the confidence intervals for each registry. Relative survival rates are included, taking into account the expected survival of the background population based on gender and age. This showed that the Southwest performed best with a relative 5-year survival rate of 63.5%, compared to 58.1% in the Northwest and Trent (Figure 3). This trend was maintained when colon and rectal cancer relative survival were individually analysed.

Expected Benefits:

The aim of this project is to look at the demographics (age, sex and gender) and long-term survival of young colorectal cancer patients (defined here as aged 40 years and below) in England. The results of this project may help inform effective screening and public awareness to best manage young colorectal cancer patients in England, and should also help target further research areas.

Outputs:

It is anticipated that the study findings will be published in peer-reviewed journals and will also be presented at relevant conferences.

Should the opportunity arise, the study may publish findings on the data controllers webpages, hold open lectures or engage with the press, this will aid the dissemination of the findings and will reach interested groups in civil society.

Processing:

Under ODR1819_262 PHE supplied pseudonymised subsets of the following datasets to University Hospitals Plymouth NHS Trust:
- NDRS Cancer Registrations
- NDRS Linked Hospital Episode Statistics (HES) Outpatients
- NDRS Systemic Anti-Cancer Therapy (SACT) Dataset
- NDRS National Radiotherapy Dataset (RTDS)
- NDRS Patient Reported Outcome Measures (PROMS) - Quality of Life in Colorectal Cancer Survivors in England
- NDRS National Cancer Diagnosis Audit (NCDA)

University Hospitals Plymouth NHS Trust supplied a limited subset of this data to its data processor, the University of Plymouth. The Trust and the University performed statistical data analyses to test the project's hypotheses.

The data received is not linked to any additional datasets. There will be no attempt to identify individuals from the pseudonymised data.

Processing is carried out by substantive employees of the data controller and data processor. All those processing the data will receive the appropriate training in data protection and confidentiality