LP-MAESTRO - Privacy Notice

Who is undertaking this research project?

The research project is being undertaken by a research team based in the Leeds Institute of Health Sciences:

Leeds Institute of Health Sciences
Level 10, Worsley Building
Clarendon Way
Leeds
LS2 9NL
United Kingdom

Email: lihs@leeds.ac.uk
Web: https://medicinehealth.leeds.ac.uk/homepage/146/leeds_institute_of_health_science

Leeds Institute of Health Sciences is situated within the Faculty of Medicine and Health at the University of Leeds:

Faculty of Medicine and Health
Leeds
LS2 9JT
United Kingdom

Web: https://medicinehealth.leeds.ac.uk/

The University of Leeds is registered as a data controller with the Information Commissioner’s Office (Registration Number: Z553814X).

The Data Protection Officer for the University of Leeds is David Wardle who can be contacted by email on d.wardle@adm.leeds.ac.uk or by post to University of Leeds, 11.72 EC Stoner Building, Leeds, LS2 9JT, United Kingdom.

What are the purpose(s) for which data are being processed within this research project?

The research project represents a preliminary sub-study of a larger funded study - LP-MAESTRO – which is funded by the National Institute for Health Research (NIHR) - Health Services and Delivery Research (HS&DR) Programme (REF: 13/58/08).

For further information, see: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/135808 and https://medicinehealth.leeds.ac.uk/directories0/dir-record/research-projects/1005/liaison-psychiatry-measurement-and-evaluation-of-service-types-referral-patterns-and-outcomes-lp-maestro.

The overall aim of LP-MAESTRO is to evaluate the cost-effectiveness and efficiency of particular configurations of liaison psychiatry services for specified target populations.

The aim of this sub-study is to perform an analysis of two specific hospitals in Birmingham. This analysis will provide comparative data to the main study sites in the larger funded study.

What is the legal basis under which data is processed within this research project?

Under the General Data Protection Regulation (GDPR), a legal basis is required for processing of personal data. The legal basis under which data is processed within LP-MAESTRO 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;”

Processing of data concerning health (and other ‘special categories’ of data) requires the fulfilment of an additional condition under GDPR. The specific condition fulfilled by the processing of such data within LP-MAESTRO 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.”

For further information, see: https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/lawful-basis-for-processing/

Which sources of data are being used by this research project?

The project will use data from the following source:

NHS Digital (NHSD)

NHSD is the national information and technology partner to the health and care system.It is responsible for collecting, analysing and presenting national health and social care data.Hospital Episode Statistics (HES) is a dataset that is held by NHSD and which includes data on all hospital episodes within all hospitals in England.

For further information visit: https://digital.nhs.uk/

How is the data being collected within this research project?

The project will use NHS data that is collected routinely by clinicians and healthcare professional as part of direct care. Such data is typically collected within the Electronic Health Records maintained by NHS organizations.

No additional or amended data is being collected for the purpose of the project.

Data required for the project will be provided from the data sources detailed above.

What categories of data will be obtained from these sources?

The project will obtain specific data from NHS Digital. The data that will be obtained has been identified by the research team as necessary and sufficient to robustly answer the research question.

The following data will be obtained:

NHS Digital (NHSD)

Data relating to Inpatient episodes from Hospital Episode Statistics will be obtained for City Hospital Birmingham and Queen Elizabeth Hospital Birmingham.This data will include diagnoses, admission and spell details, treatment specialty and provider organizations.

For further information visit: https://digital.nhs.uk/

Will my data be used by the research project?

Data relating to hospital admissions will be included in the data obtained for this research project if:

You have been previously admitted to City Hospital Birmingham or Queen Elizabeth Hospital Birmingham

AND

Your admission to one of the two hospitals was within the five year period chosen for the study (1st April 2007 – 31st March 2011)

Can I opt-out of the use of my data by the research project?

The national opt-out programme was not in place on commencement of the study. Accordingly, there was no established mechanism for patients to register an opt-out for the inclusion of their data in Hospital Episode Statistics (HES).

For further information, see: https://digital.nhs.uk/services/national-data-opt-out-programme

How will my privacy be protected?

The project will use anonymised data for analysis purposes. This means that no patient identifiable data, such as name and address, will be included in the data obtained by the research team at the University of Leeds. Instead, patients will be uniquely referenced using non-personal identifiers that can’t be decoded by the researchers to re-identify individuals. Additionally, the research project will use only that data which is necessary and sufficient to robustly answer the research question.

The data source (NHSD) will remove all patient identifiable data and use unique (non-personal) identifiers to reference patients in the data supplied to the University of Leeds.

All data received at the University of Leeds will be securely stored within an infrastructure that is compliant with the Data Security and Protection Toolkit (see https://www.dsptoolkit.nhs.uk, Reference: ECC0010), and will be managed in accordance with the Data Sharing Agreements that govern the use of the data obtained from the different sources. Access to the data will be restricted to a small number of named and approved members of the research team.

What are my rights in relation to the data?

The General Data Protection Regulation provides the following rights for individuals in relation to their personal data:

The right to be informed
The right of access
The right of rectification
The right to erasure
The right to restrict processing
The right to data portability
The right to object
Rights in relation to automated decision making and profiling

For further information, see: https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/individual-rights/.

A summary of these rights and their applicability in respect of this project is provided in the table below.

Right	Applies to this project	Rationale
The right to be informed	Yes	Details regarding the project and its use of data is provided within this privacy notice. Additional information regarding the main project (for which this is a sub-study can be found at: https://www.journalslibrary.nihr.ac.uk/programmes/hsdr/135808 and https://medicinehealth.leeds.ac.uk/directories0/dir-record/research-projects/1005/liaison-psychiatry-measurement-and-evaluation-of-service-types-referral-patterns-and-outcomes-lp-maestro.
The right of access	No	The research team at the University of Leeds are not able to identify specific data subjects in the data provided by NHS Digital. The right of access does not apply to this research project as the research team are unable to determine the data that relates to a specific data subject.
The right to rectification	No	The research team at the University of Leeds are not able to identify specific data subjects in the data provided by NHS Digital. The right to rectification does not apply to this research project as the research team are unable to determine the data that relates to a specific data subject.
The right to erasure	No	The research team at the University of Leeds are not able to identify specific data subjects in the data provided by NHS Digital. The right to erasure does not apply to this research project as the research team are unable to determine the data that relates to a specific data subject.
The right to restrict processing	No	The research team at the University of Leeds are not able to identify specific data subjects in the data provided by NHS Digital. The right to restrict processing does not apply to this research project as the research team are unable to determine the data that relates to a specific data subject.
The right to data portability	No	The research team at the University of Leeds are not able to identify specific data subjects in the data provided by NHS Digital. The right to data portability does not apply to this research project as the research team are unable to determine the data that relates to a specific data subject.
The right to object	No	The national opt-out programme was not in place on commencement of the study. Accordingly, no mechanism was in place for patients to register an opt-out for the inclusion of their data in Hospital Episode Statistics (HES). For further information, see: https://digital.nhs.uk/services/national-data-opt-out-programme Once the data has been received by the research team from NHS Digital, the right to object does not apply to the project as the research team are unable to determine the data that relates to a specific data subject.
Rights in relation to automated decision making and profiling	No	The analysis performed within this project will evaluate the cost-effectiveness and efficiency of particular configurations of liaison psychiatry services at the two hospitals in Birmingham for specified target populations. Patients referenced in the data will be analysed in respect of their health by automated means to understand outcomes. The analysis performed by the research team will not produce automated decisions about specific patients who are referenced in the data. Analysis will be used to determine the cost-effectiveness and efficiency of different liaison psychiatry configurations at the two hospitals in Birmingham and will provide comparative data to the main study sites in the larger funded study.

Will my data be transferred to any organisations outside of the University of Leeds?

Data will only be transferred outside of the University of Leeds for the purposes of off-site backup. Off-site backup locations are designated by the University of Leeds and located within the United Kingdom.

How long will my data be retained by the research project?

Data will be retained by the research project for two years after the end of the project to facilitate the publication of reports.

What approvals have been obtained by the research project?

The research project has successfully obtained:

Favourable opinion from the School of Medicine Research Ethics Committee (SoMREC) at the University of Leeds (REF: SoMREC/13/059).
Approval from the Information Asset Owner at NHS Digital (REF: NIC-31599-W2W4C).

What if I have further questions?

Any questions regarding the project can be directed to research team at the Leeds Institute of Health Sciences, who can be contacted using the details provided above.

Additionally, any queries or concerns regarding the processing of personal data can be made to the Information Commissioner’s Office (https://ico.org.uk).