RESURGENT Privacy Notice - Project 2

Project 2 - Privacy Notice

This Privacy Notice explains how we will process (e.g. collect, use, store, and share) your data as part of the RESURGENT study. We will process any data about you in accordance with this Privacy Notice and with applicable law.

The name and contact details of the data controller.

Barts Health NHS Trust, The Royal London Hospital, 80 Newark Street, London, England, E1 2ES

The name and contact details of the data controller's representative.

Dr Tom Abbott; Tom.Abbott@nhs.net

The contact details of the data controller's data protection officer.

Barts Health NHS Trust, 3rd Floor, 9 Prescot Street, Aldgate, London, E1 8PR, 020 7480 4892, dpo.bartshealth@nhs.net

The purposes of the processing.

The aim of this project is to provide a detailed understanding of the impact of COVID-19 on patients with surgical disease within the NHS. Using routinely collected hospital episode statistics data in England and Wales, the direct (i.e. harm from suffering COVID-19 at the time of surgery) and indirect (i.e. harm from delays to care due to disruption in surgical care) effects of the pandemic will be explored.

Initial data suggest that patients undergoing surgery who have COVID-19 are at very high risk of both pulmonary complications (1 in 2) and death (1 in 4). This is around 20 times the usual risk of death expected amongst patients undergoing surgery. The largest study that generated this data enrolled 1128 patients from 235 hospitals in 24 countries. However, this represents only 484 patients from the UK, so the findings may not be generalisable to NHS patients. In addition, these data were collected at the height of the pandemic and only report outcomes of surgical patients with COVID-19, so they lack reliable (COVID-19 negative) comparator.

During the COVID-19 pandemic, there were rapid changes to care delivery in the NHS to facilitate treatment of the large number of patients suffering COVID-19. This involved cancellation of almost all planned surgery, causing unintended harm by delaying urgent surgery such as cancer treatment. 

There is currently no routine national reporting of surgical activity and the true impact of surgery delays on patient survival, which is a concern to both patients and surgeons. This lack of information makes balancing risks and benefits of surgery impossible. Understand the direct effects of COVID-19 infection and the indirect effects of disruption to surgical care will support policymakers to balance these competing concerns.  

The following datasets are needed for this project:

• Admitted Patient Care (APC) for all patients undergoing surgery between 1^st April 2015 and 31^st December 2020 to help understand the risk of death among patients associated with COVID-19.
• Outpatients (OP) data for all patients attending a surgical clinic between 1^st April 2015 and 31^st December 2020. This will help measure the number of additional deaths indirectly caused through delaying surgery.
• Accident and Emergency (A&E) data and the Emergency Care Data Set (ECDS) for all patients attending A&E between 1^st April 2015 and 31^st December 2020. This will help to further capture the number of additional deaths indirectly caused through delaying surgery, as there may be patients who present to A&E with a disease that they would normally have surgery for, but are instead sent home due to the given hospital situation.
• Civil Registration Deaths data (latest available) and linkage using the HES:Civil Registration (Deaths) bridge will allow quantification of postoperative mortality and determine the rate of death among those presenting to surgical outpatients and A&E.

We will be specifically reporting: 

1. Measure the number of COVID-19 associated deaths following surgery at 30- and 90-days.
2. Estimate the excess number of deaths in patients with surgical disease, including both direct surgical deaths and indirect deaths as a result of delays in the provision of surgical treatment.

All outputs will be aggregated in line with NHS Digital guidance and standard statistical disclosure methods. The findings of the project will support decision making at a national, regional, and local level across England, influencing the teams that plan care across the NHS. Only summary/aggregated level data with small numbers suppressed in line with the HES Analysis Guide will be included in the outputs and publications. No data will be used for commercial purposes and only aggregated data will be provided to third parties (e.g. in preparing reports for publication).

The legal basis for processing personal data is performance of a task by a public organisation in the public interest (Article 6(1)e of the Data Protection Act 2018) and for processing special category data is Article 9(2)j of the same, as the purpose is scientific research.

The lawful basis for the processing.

This research is a task in the public interest and as such the lawful basis of access is article 6(1)e of the Data Protection Act 2018. The lawful basis of access to special category data is article 9(2)j given this is scientific research.

The legitimate interests for the processing (if applicable).

Not applicable.

The categories of personal data obtained (if the personal data is not obtained from the individual it relates to).

Only pseudonymised patient-level data is being used. The categories of personal data being obtained are as follows:

• Patient characteristics (age, sex, ethnicity, socioeconomic status)
• Hospital records, including procedures performed and diagnoses (from admitted patient care, outpatient care, accident and emergency attendance).

 

The recipients or categories of recipients of the personal data.

The personal data will only be accessed by named healthcare researchers working directly on the research project.

The details of transfers of the personal data to any third countries or international organisations (if applicable).

This is not applicable as data obtained will not be transferred to any third countries or international organisation.

The retention periods for the personal data.

Access to pseudonymised, record level data will be in line with the Data Sharing Agreement, which is anticipated to be three years in line with NHS Digital guidance. Summary outputs will be stored for 20 years following study completion.

The rights available to individuals in respect of the processing.

All opt-outs reported through the national data opt-outs service will be respected. Barts Health NHS Trust will not apply National Data Opt outs to this pseudonymised data. As data accessed by the study team will be pseudonymised, it will not be possible for the study team to provide access, rectify or erase individuals’ data, such requests should be made directly to NHS Digital.

The right to withdraw consent (if applicable).

This is not applicable as no patient recruitment is involved. All national opt-outs will be respected where possible.

The right to lodge a complaint with a supervisory authority.

Individuals concerned about the use of this data should contact the Data Protection Office at Barts Health NHS Trust in the first instance.

The source of the personal data (if the personal data is not obtained from the individual it relates to).

All pseudonymised patient-level data used for the study is held by NHS Digital.

The details of whether individuals are under a statutory or contractual obligation to provide the personal data (if applicable, and if the personal data is collected from the individual it relates to).

This is not applicable as the source of the data is NHS Digital with no personal data collected directly from the individual it relates to.

The details of the existence of automated decision-making, including profiling.

No automated decision-making or profiling will be performed using this data.