Parent and professional experience of 24/7 paediatric end-of-life care: a mixed methods study

The University of York requires access to NHS England data for the purpose of the following research project:

Parent and professional experience of 24/7 paediatric end-of-life care: a mixed methods study

The following is a summary of the aims of the research project provided by the University of York:

The research aims to determine whether there are disparities in end-of-life care for children associated with demographics and the provision of 24/7 paediatric palliative care services.

The objective of the study will enable a comprehensive, representative (whole population) quantitative analysis of end of life care. To understand and compare end of life care, we need to be able to measure the relevant outcomes - unplanned hospital care use in the last 12 months of life and variations in place of death by demographics and in relation to implementation of 24/7 paediatric palliative care services elsewhere.

The study has three workstreams:

• Workstream one will involve conducting focus groups with health professionals to find out what they think about the current provision of 24/7 paediatric end-of-life care, and their expectations and needs of a new service.

• Workstream two will involve speaking to families to find out about their experiences of out of hours care. We will interview parents whose child has a life-limiting diagnosis and is receiving palliative care and parents whose child has died.

• Workstream three will look at data that is already collected by the NHS to find out about differences across the region in A&E and emergency hospital admissions in the last 12 months of life and in where children die, and in order to identify possible examples of good practice we will also compare the region to other areas where 24/7 care services have been implemented.

Finally, the findings from the three workstreams will be integrated and used to develop an intervention and recommendations/ guidance for best practice.

This data request will be in relation to Workstream three only.

The following NHS England Data will be accessed:

• Hospital Episode Statistics Admitted Patient Care (APC) – necessary to determine diagnosis of admitted patients.

• Hospital Episode Statistics Accident & Emergency (A&E) and Emergency Care Data Set (ECDS) – necessary to determine attendance of emergency departments.

• Civil Registration of Death Data – necessary to establish place and full date of death is required to enabling a focus on the final 12 months of life and place of death as assessing disparities in place of death is one of the study objectives. Place of death is required to establish hospice address details.

The level of the Data will be:

• Pseudonymised

The Data will be minimised as follows:

Limited to a study cohort identified by NHS England as meeting the following criteria:

• Individuals who have died aged up to and including 18 years and the date of death is on or after 1/4/2013.

• Limited to data between 2012/13 and 2023/24 latest available to provide sufficient years of data to identify trends in emergency care use and place of death and to capture introduction of any 24/7 palliative care services with sufficient years of data before and afterwards to assess impacts.

• Limited to data for the last 12 months of life.

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 personal 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, which protects and promotes the interests of patients, service users and the public, and aims to produce generalisable and publicly available information to inform future decisions over patients’ treatments or care.

The funding is provided by Marie Curie. The funding is specifically for the study described. Funding is in place until March 2025.

The funder will have no ability to suppress or otherwise limit the publication of findings.

The Project Management Team includes representatives form the University of York, University of Leeds and Kings College London. The Steering Committee also includes representatives from the NHS and Together for Short Lives and parents. Neither the Study Steering Committee nor Project Management Team will have access to record-level data, only aggregate data with small numbers suppressed in line with the HES analysis guide.

Data will be accessed by:

• Substantive employees of the University of York.

A Public and Patient Involvement and Engagement (PPIE) group helped refine the purpose of the research. The group supported the collection of the data for the purposes described above. Initially this include involvement of the Martin House Research Centre (MHRC) Family Advisory Board (FAB), which included parents and other adult family members of children with a life-limiting condition including parents of a child who has died (n~20) who contributed to the development of this study and The group strongly supported the collection of the data for the purposes described above. The MHRC no longer exists, but the study has continued PPIE involvement through a collaboration between former members of the MHRC. They plan on running two knowledge exchange events in the near future, with key stakeholders including professionals and parents. The study has also a PPI partner on the study steering committee who will, during the study, be running knowledge exchange events with key stakeholders including parents.

No data will flow to NHS England for the purposes of this Data Sharing Agreement (DSA).

NHS England will provide the relevant records from the HES Admitted Patient Care (APC), Accident and Emergency (A&E) Emergency Care Data set (ECDS), and Civil Registration Deaths datasets to University of York.

The Data will contain no direct identifying data items. The Data will be pseudonymised.

The University of York will be able to identify from the ‘establishment type data field’ whether a death occurred in hospital or not. The analysis dataset which will only contain the HES pseudo-ID, date of death and classification of place of death, for example, as "hospital or not".

The Data will be stored on servers at The University of York.

The Data will be accessed onsite at the premises of The University of York.

The Data will be also accessed by authorised personnel via remote access.

The Controller must confirm and provide evidence upon audit by NHS England that access via any remote device complies with the data security obligations within this DSA and the Data Sharing Framework Contract.

For remote access:

- Remote access will only be from secure locations situated within the territory of use (as further restricted elsewhere within the DSA if so done) stated within this DSA;

- Access controls granting users the minimum level of access required are in place;

- Remote access is only via secure connections (e.g., VPNs or secure protocols) to protect data;

- Multifactor authentication (MFA) is required for remote access;

- Device security, including up-to-date software and operating systems, antivirus software, and enabled firewalls are utilised for the remote access;

- All remote access is undertaken within the scope of the organisation’s DSPT (or other security arrangements as per this DSA) and complies with the organisation’s remote access policy.

The above applies in addition to any condition set out elsewhere within the DSA (e.g. who may carry out processing, and for what purpose).

The Data will not leave England at any time.

Access is restricted to employees of The University of York 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 University of York will analyse the Data for the purposes described above.

The expected outputs of the processing will be:

• Submissions to peer reviewed journals by December 2025 (e.g. Archives of Disease in Childhood, Palliative Medicine)

• Lay summaries of research findings, including a formal report to the funder and to the regional Integrated Care Board.

• Presentations at specific conferences (The Maruzza Congress; European Association for Palliative Care congress; and to general clinical conferences within the UK, e.g. Royal College of Physician (RCP) conference)

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 dataset(s) from which the information was derived.

The aim is to disseminate the results to the scientific community. This will be done via numerous channels including presentation (local, national and international) and peer reviewed journals.

The target dates for production of outputs is by December 2025.

The findings of this research are expected to contribute to 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 regional and national trends in health and social care needs.

· provide insights on unmet needs and desires for an end of life 24/7 paediatric palliative care service, from the point of view of both care providers and young people and their families.

· 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 which need to be addressed.

In addition, the Yorkshire region has a statutory obligation to provide a 24/7 end of life paediatric palliative care service. The present research will directly inform development and provision of that service, ensuring that it best fits the needs of the population served and takes on board lessons from other regions where such services have been shown to have a positive impact. As such, it has a direct route to impact within the region. The findings will also be widely available to other regions throughout England and beyond and are likely to be generalisable to inform development and revision of such services elsewhere.

Yielded Benefits is not a requirement for new applications.