NHS Digital Data Release Register - reformatted

Medway NHS Foundation Trust projects

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


Inflammatory bowel disease (IBD) surgical care during the COVID-19 outbreak: a retrospective analysis of the practice and outcomes described in the Hospital Episode Statistics database — DARS-NIC-403429-N2X9B

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, No (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, and Non-Sensitive

When:DSA runs 2023-06-12 — 2026-06-11 2024.04 — 2024.04.

Access method: One-Off

Data-controller type: MEDWAY NHS FOUNDATION TRUST

Sublicensing allowed: No

Datasets:

  1. Civil Registrations of Death - Secondary Care Cut
  2. Emergency Care Data Set (ECDS)
  3. HES:Civil Registration (Deaths) bridge
  4. Hospital Episode Statistics Admitted Patient Care (HES APC)
  5. Hospital Episode Statistics Critical Care (HES Critical Care)

Objectives:

Medway NHS Foundation Trust requires access to NHS England data for the purpose of the following research project: Inflammatory bowel disease (IBD) surgical care during the COVID-19 outbreak: a retrospective analysis of the practice and outcomes described in the Hospital Episode Statistics database.

The following is a summary of the aims of the research project provided by Medway NHS Foundation Trust.

‘’In this project, the team would like to use the data extracted from HES for analytical and research purposes. They would like to retrospectively analyse the practice and surgical outcomes of IBD patients during the COVID-19 pandemic. They will analyse pseudonymised patient data from the HES database for patients identified with IBD symptoms to answer research questions.

The key aims of the study will be to investigate the following:

(i) Were there reduced elective surgical services for IBD patients based on pre-March 2020 levels during the peak of the pandemic from 01 March 2020 until 28 February 2021?

(ii) Was there a rebound of emergency cases in the year following the easing of restrictions (01 March 2021 to 28 February 2022)?

(iii) Have surgical services for IBD patients returned to pre-pandemic levels in the year from 01 March 2022 to 28 February 2023?

(iii) Were there increased numbers of post-operative complications to IBD patients caused by the reduction in elective services (including re-admissions); and

(iv) Determining potential risk factors or causality, where complications in this cohort of patients have occurred (e.g. age, gender, co-morbidities, timing to surgery, COVID-19 positive patients).’’

The following NHS England data will be accessed:

- Civil Registrations Mortality
- Hospital Episode Statistics Admitted Patient Care (HES APC)
- Hospital Episode Statistics Critical Care (HES Critical Care)
- Emergency Care Data Set (ECDS)

The HES and mortality datasets are required to identify patients undergoing surgery for all Ulcerative Colitis (UC) and Crohn’s disease UC or Crohn’s from 1 March 2019 to 28 February 2023 and understand the difference different surgical outcomes leading up to, during and following the COVID-19 pandemic. The data would provide:
1) time from admission to surgery,
2) surgery required (and whether this was done as an emergency or planned),
3) any morbidity (complications)/mortality,
4) hospital length of stay
5) re-admissions,
6) if patients received any medical management prior to having surgery (e.g. steroids, biologics),
7) patients' characteristics (or contributing risk factors) such as age, ethnicity, gender

This data would also provide sufficient detail to allow the study to analyse any trends or patterns between geographical areas and to identify any regions which had disproportionally poorer/better surgical outcomes than others.

The level of the data will be Pseudonymised.

The data has been minimised as follows:

• Limited to data between 1 March 2019 to 28 February 2023

• Limited to conditions relevant to the study identified by specific International Classification of Diseases (ICD) 10th Revision code or Classification of Interventions and Procedures(OPCS) codes.

The Medway NHS Foundation Trust is the data 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 and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

The funding is provided by Medway NHS Foundation Trust. The funding is specifically for the study described. Funding is in place with no time limit stated.

Data will be accessed by an individual with an honorary contract with Medway NHS Foundation Trust. The individual, commenced this research project whilst employed by Medway NHS Foundation Trust but is now on rotation, working at East Sussex Healthcare NHS Trust.

The Study Team may wish to include collaborators, such as a statistician for the purpose of data analysis. Before any data is shared with such individual, an honorary contract will be provided to NHS England.

There has been no direct patient and public involvement and engagement (PPIE) for this study.

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 relevant to the subject matter of the study.

The use of the data could:

• lead to the identification or improvement of treatments or interventions, or health and care system design to improve health and care outcomes or experience.
• advance understanding of the need for, or effectiveness of, preventative health and care measures for particular populations or conditions.
• inform planning health services and programmes, for example to improve equity of access, experience and outcomes.

The team hopes the findings may be interesting and of educational, clinical and operational value in promoting the health and outcomes of IBD patients during subsequent COVID waves.

1) It is considered that the findings will be of interest to clinicians and health professionals to:
a) set priorities and target action in their local areas;
b) understanding of pressure points and planning for future surgical needs;
c) use the data to provide a benchmarking tool to NHS Trusts and Integrated Care Systems (ICSs) to consider the impact of policy, operational and clinical decisions for IBD patients who require surgical care in the event of a further wave;
d) help assess current care strategies and pathways for IBD patients from an aggregated data picture;
e) best identify and manage the IBD at-risk patient cohort;
f) highlight regional variations in surgical care, time to surgery and outcomes (including post-operative complications) of surgery and to seek a reduction in variation of outcomes;
g) identify and consider the impact of any association between the timing of surgery and surgical outcomes for IBD patients; and
h) make informed operational decisions for IBD patients leading to the best clinical outcomes, improving efficiencies, and leading to financial savings to the NHS.

It is hoped the outputs will provide valuable data which may identify any casual links between the delay in elective and emergency surgery for this patient cohort and post-operative complications presented. It is expected to provide further insight into those most at-risk.

This project will be a stand-alone project, but the data findings may provide further insight into the association between the timing of surgery and surgical outcomes for IBD patients.

The outputs are likely to be of educational and research interest. It may influence decisions regarding surgical care planning for, or during subsequent COVID waves as detailed in question 1 a) - h) above.

The magnitude of the impact is to be confirmed as the number of patients affected during the COVID pandemic is unknown. However, the data may reflect the surgical care of this cohort during the pandemic and may highlight the impact caused by delays in treatment, and any correlation with potential risk factors, causality, and surgical complications (e.g. age, gender, co-morbidities, timing to surgery, COVID-19 positive patients).

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.

Outputs:

The expected outputs of the processing will be:

• A report of findings to Medway NHS Foundation Trust.
• Submissions to peer reviewed journals with particular interest in the surgical outcomes of IBD patients (e.g. British Journal of Surgery, Inflammatory Bowel Diseases).
• Presentations to Medical & Nursing Directors, Heads of Governance, NHS Managers, Information Analysts, Researchers, Clinicians, Nurses, IBD Patients and/or family members of affected patients.
• Presentations at conferences with an interest in IBD patients (e.g. Association of Surgeons of Great Britain and Ireland ASGBI, Association of Coloproctology of Great Britain and Ireland ACPBGI).

The outputs will not contain NHS Digital 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 (with an interest in surgery/management of IBD patients)
• Webinars open to clinicians with an interest in IBD care
• Social media (to promote publication of study findings in research articles/abstracts)
• Public reports
• Public events (e.g. conferences for clinicians with an interest in IBD care)
• Posters displayed at conferences, local/regional meetings for clinicians with an interest in IBD care
• Public promotion of the research (e.g. on social media with links to publication of research article/abstract, results of findings)
• Reports aimed at IBD patients

The applicant aims to complete the project (including all outputs) within 3 years of receiving the data.

Processing:

No data will flow to NHS Digital for the purposes of this Agreement.

NHS England will provide the relevant records from the Civil Registration Mortality, HES APC, HES Critical Care and ECDS datasets to Medway 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 Medway NHS Foundation Trust.

The data will be accessed by authorised personnel via remote access. The data will remain on the servers at Medway NHS Foundation Trust at all times.

Personnel are not technically capable of downloading or copying data to local devices.

The data will not leave England at any time.

Data will be accessed by an individual with an honorary contract with Medway NHS Foundation Trust. The individual will act as an agent of Medway NHS Foundation Trust at all times under supervision from substantive employees of Medway NHS Foundation Trust. Aside from this individual, access is restricted to substantive employees of Medway NHS Foundation Trust 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 Medway NHS Foundation Trust will process the data for the purposes described above.