NHS Digital Data Release Register - reformatted

East Anglian Air Ambulance projects

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


NHS England to undertake record linkage of East Anglian Air Ambulance patients to HES APC, Adult Critical Care and ECDS — DARS-NIC-401935-N9W7P

Type of data: information not disclosed for TRE projects

Opt outs honoured: Anonymised - ICO Code Compliant, Yes (Section 251 NHS Act 2006)

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

Purposes: No (Agency/Public Body)

Sensitive: Non-Sensitive

When:DSA runs 2023-08-21 — 2024-08-20 2023.11 — 2023.11.

Access method: One-Off

Data-controller type: EAST ANGLIAN AIR AMBULANCE

Sublicensing allowed: No

Datasets:

  1. Emergency Care Data Set (ECDS)
  2. Hospital Episode Statistics Admitted Patient Care (HES APC)
  3. Hospital Episode Statistics Critical Care (HES Critical Care)

Objectives:

East Anglian Air Ambulance (EAAA) requires access to NHS England Data for the purpose of conducting a feasibility exercise in order to determine the value of using linked NHS England Data for the service evaluation of the EAAA.

The following is a summary of the aims of the project provided by EAAA:

“The purpose of this data linkage is to carry out an audit and evaluation of outcomes of patients treated by East Anglian Air Ambulance. Linkage with Hospital Episode Statistics (HES) Admitted Patient Care (APC), Emergency Care DataSet (ECDS) and Critical Care will enable EAAA to audit and evaluate their pre-hospital care of the patient in relation to the entire patient pathway e.g. diagnoses, procedures, and the ultimate outcomes of the patient after they have been discharged from their care.

The initial phase will test linkage on the 2021/22 cohort (Approx 1600 patients) to test the feasibility and usage of dates before expanding to further years of data collection, however, amendments will be subject to support from the Confidentiality Advisory Group (CAG) and approval from NHS England for data for further cohorts.

EAAA do not routinely get information about their patients after they have been admitted to the hospital, other than on an ad-hoc clinician-to-clinician basis about specific patients and to provide aftercare services. EAAA has data-sharing agreements in place with some local hospitals to facilitate this. However, it is impractical and has proved impossible to achieve routine data sharing of outcomes for all their patients, given that they take patients to a range of hospitals within and outside the Eastern region covered by the EAAA (26 Hospitals in the last year).

Obtaining this outcomes information from a central source could be extremely useful for internal audit and evaluation purposes and has the potential to inform and improve our clinical practice.

To date, no other Air Ambulance Organisation has conducted this kind of evaluation research. Questionnaires with the patients have been performed, but the finer detail of the patient pathway has proved difficult due to the size and nature of the work involved, NHS England Data may provide invaluable information to improve the services".

The Data will be used to provide the following outcomes only:
• Service evaluation
• Service analysis
• Care pathway analysis

The following NHS England Data will be accessed:
Hospital Episode Statistics Admitted Patient Care (HES APC):
The dataset is necessary as it will allow the study team to audit the care of the patient in the hospital, including procedures and discharge destination (including death).

Emergency Care Data Set (ECDS):
The dataset is necessary to understand waiting times from ambulance to hand over to the hospital, hospital care, diagnoses, and discharge details, especially for patients not admitted to the hospital.

Hospital Episode Statistics Critical Care (HES CC)
The dataset is necessary as it will allow the study team to follow the care of the patient in the hospital, including procedures and discharge destination.

The level of the Data will be pseudonymised.

The Data will be minimised as follows:
Limited to a study cohort (approx. 1600 patients) identified by EAAA consisting of all patients treated by East Anglian Air Ambulance, (excluding those who die before admission to hospital) during 2021/22.

EAAA is the research sponsor and the 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)(h) - processing is necessary for the purposes of preventive or occupational medicine, for the assessment of the working capacity of the employee, medical diagnosis, the provision of health or social care or treatment, or the management of health or social care systems and services on the basis of domestic law or pursuant to contract with a health professional and subject to the conditions and safeguards. EAAA has considered how the processing may affect individuals and can justify the use of data in this way as the information is being used to support the direct care of patients to improve clinical excellence via audit and evaluation.

The funding is provided by EAAA. The funding is specifically for the study described. Funding is in place until the end of the study.

A Public and Patient Involvement and Engagement group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above.
The applicant held a meeting with the EAAA Patient Forum Group, specifically to discuss the importance of patient data and the choices they had, their aim was to obtain feedback from the patient forum to find out if they understand their choices about how confidential health data is used and their trust in EAAA to manage data appropriately, whilst also establishing if there is patient support for a proposed project where EAAA is aiming to obtain centrally held NHS records from NHS England.

Expected Benefits:

The service evaluation is expected to identify improvement opportunities which may then be exploited by making changes to systems, processes, resources, or infrastructure in order to improve patient experience and patient care.

The use of the Data could:
• help the system to better understand the health and care needs of populations.
• 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
• inform planning health services and programmes, for example, to improve equity of access, experience, and outcomes.
• inform decisions on how to effectively allocate and evaluate funding according to health needs within EAAA.
• provide a mechanism for checking the quality of care. This could include identifying areas of good practice to learn from, or areas of poorer practice that need to be addressed.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).

This project is expected to benefit future patients of East Anglian Air Ambulance. Alongside regular audits EAAA already undertakes using their data, this proposed linkage with centrally held NHS data would allow EAAA to audit and evaluate the care provided by the air ambulance in relation to the complete patient pathway and patient outcomes. This may give opportunity for improved clinical excellence, may give learning opportunity for our clinical staff, and ultimately, could lead to improved care for future patients (members of the public) of the air ambulance.

The wider public interest is that East Anglian Air Ambulance is a key provider of pre-hospital emergency care within East Anglia, attending to the most critically ill patients within the region. EAAA provides a service (entirely charitable funded) to patients across the region, which is offered in conjunction with the NHS (with who EAAA is tasked) and is free and available to all.

EAAA will also share our experience and outcomes of the study with our air ambulances and NHS partners so that this project can potentially be of wider regional and national benefit in terms of using data to maximise patient benefit.

Outputs:

The expected outputs of the processing:
Reports will be prepared on the following:
- Accuracy and value of the linkage - % of EAAA patients successfully linked by NHS England, including analysis by type of patient. The team anticipates that many of their patients may not link, particularly sicker patients who are less likely to have their personal details accurately recorded.

Assuming the linkage is adequate, the Data may be used to evaluate the following audit and service evaluation topics:
- Accuracy of Dispatch and Diagnosis: To identify the proportion of patients whose condition is correctly categorised: 1) At tasking 2) At scene based on EAAA’s working diagnosis. By comparing with the final diagnosis (ICD-10 code) after admission
- Survival: Proportion of people who survive to discharge. This could be analysed and adjusted for case mix and key factors such as age, condition, hospital, etc.
- Decision making: To consider the accuracy of conveyance (e.g. where patients are soon transferred onwards to another hospital) or unnecessary conveyance (patients who had no additional investigations or treatments at the hospital which need to be provided in a hospital setting)
- Special cases or rarer conditions - analysis of patient records to look at the whole patient pathway and consider any learning opportunities.
- Impact of pre-existing comorbidities on pre-hospital care. These are recorded as associated diagnoses on the hospital record but are often not well known about or not recorded during emergency care.

Findings will be disseminated internally within EAAA within a year of receiving the data. Summary findings may be shared with other air ambulances and pre-hospital services as they are likely to be interested to hear if the project is useful. if the study is judged to be of wider interest, the findings may be written up as a service evaluation study for a peer-reviewed journal.

The data will also be used to decide whether to request further linkages of patient cohorts in the future and to develop research ideas for the future. The current CAG application only covers non-research uses of the data.

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 datasets from which the information was derived.

These outcomes would be completed within 12 months of receiving the data.

Processing:

EAAA will transfer data to NHS England. The data will consist of identifying details (specifically NHS Number, Full name, Date of Birth, Home Address, Postcode, Gender, and a unique person ID) for the cohort to be linked with NHS England Data.

NHS England will provide the relevant records from the HES APC, CC, and ECDS datasets to EAAA.

The Data will contain no direct identifying data items but will contain a unique person ID which can be used to link the Data with other pseudonymised record-level data already held by the recipient:

1. EAAA will create a table (table A) which is pseudonymised data items from their patient database (e.g. diagnoses made and interventions undertaken by EAAA). This will include a study ID created entirely for the purposes of the linkage which is in no way related to the original patient database.

2. At the same time, EAAA will also create a link file (table B) that has the study ID (as above) and the patient identifiers being disclosed to NHS England for the purposes of the linkage. This file will be sent to NHS England. After sharing with NHS England, table B will be deleted and not held by EAAA. So, this will ‘break the link’ and at this point, the study ID is no longer a patient identifier EAAA will have no way of relating it back to other identifiable information that they hold.

3. The file returned from NHS England will contain the study ID and the Data being requested. EAAA will link this to (table A) using the study ID. But there will be no way of reidentifying patients as the study ID will mean nothing to EAAA other than for linkage to Table A.

4. EAAA will then delete the study ID from the dataset as it will no longer be necessary once they have linked the data. EAAA will generate a new, unrelated, identifier for the data.

The Data will not be transferred to any other location.

The Data will be stored on servers at EAAA.

EAAA uses offsite backup disaster recovery services provided by Datto.

EAAA stores Data on the Cloud provided by Microsoft Ltd.

The Data will be accessed by authorised personnel via remote access. The Data will remain on the servers at EAAA at all times.

Remote processing will only be through a secure electronic network and technical controls prevent personnel from downloading or copying data to local devices.

Remote processing will be subject to the following being in place:
• Multifactor authentication (MFA);
• Access controls granting users the minimum level of access required;
• Secure connections (e.g., VPNs or secure protocols) to protect data during remote access;
• Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls.

All remote access is undertaken within the scope of the relevant organisations’ DSPT (or other security arrangements as per this Data Sharing Agreement (DSA)).

Remote processing will be from secure locations within England/Wales. The Data will not leave England/Wales at any time.

Access is restricted to employees or agents of EAAA who have authorisation from the Principal Investigator.

All personnel accessing the Data have been appropriately trained in data protection and confidentiality.

The Data will be linked with data held within the EAAA database.

There will be no requirement and no attempt to reidentify individuals when using the Data.

The identifying details will be stored in a separate database from the linked dataset used for analysis. All analyses will use the pseudonymised dataset. There will be no requirement and no attempt to reidentify individuals when using the pseudonymised dataset.

The Data returned from NHS England will contain the study ID to allow linkage to EAAA pseudonymised patient data but no patient identifiers will be present and no attempt will be made to re-identify patients at an individual level. The data will be stored in a secure ‘invite only’ location protected by multi-factor authentication and only accessible via the EAAA network on-site or remotely using work phones or laptops. Access to the data will be limited to the Research and Development team (R&D) the R&D data analyst and a small number of clinicians working on the project. These people are employees of East Anglian Air Ambulance and already have access to patients' records as part of their normal duties working as clinicians or carrying out clinical audits.

Analysts from the EAAA will analyse the data for the purposes described above.