NACEL Privacy Notice

This privacy notice provides information for clinicians, hospital staff and those important to deceased patients whose information may be used in the National Audit of Care at the End of life (NACEL). It explains what type of information we collect, why we collect it, and what we do with it.

This page further informs you of our policies regarding the collection, use and disclosure of Personal Information when you access the NACEL Website.

The overall aim of NACEL is to improve the quality of care when somebody dies in a hospital inpatient setting in England, Wales and Jersey.

 Audit objectives:

  • Improving quality of care by identifying areas for action in relation to delivery and outcomes, and adapting QI priorities in line with evidence and guidance

  • Reducing unwarranted variation through benchmarking of outcome measures as well as identifying and managing outliers using the appropriate guidance 

  • Understanding and reducing health inequalities in relation to impact on the specified measures

  • Sharing and adopting best practice including QI examples, and signposting to resources available in the wider End of Life landscape

Data collected from NACEL will provide high quality information about the quality, delivery and outcomes of care delivered to dying patients and those important to them during the final admission in hospital.

The information collected will be delivered to local providers of healthcare that have participated in the audit, to enable these organisations to assess their performance and identify how well they meet standards in end of life care. The information collected will also be reported nationally.

Data ownership

NACEL is delivered by NHS Benchmarking Network (NHSBN), under a contract from Healthcare Quality Improvement Partnership (HQIP). The NHSBN team (The Benchmarking Network Ltd) is a subcontractor to East London NHS Foundation Trust (ELFT) (host of the Network). The purpose of NHSBN is to provide essential data that drives decision making within the NHS.

NHSBN is the data processor for the information you provide to us as part of NACEL. HQIP is the funder for the audit. HQIP is the joint data controller with NHS England and Digital Health and Care Wales for the data submitted to NACEL.

Legal basis

The legal bases for collecting and processing data for NACEL are:

  • Data Protection Act DPA 2018 Schedule 1(1)(3) ‘Public health’, underpinned by Health and Social Care Act 2012 Part 1 Section 2, which allows for data processing for health or social care purposes.

  • Article 6(1)(e) of the General Data Protection Regulation (GDPR) which allows for the processing of data where this is carried out in the public interest or in the exercise of official authority vested in our joint data controllers, HQIP, NHS England and the Welsh Government.

  • Article 9(2)(i) of the General Data Protection Regulation (GDPR) which allows for the processing of personal data for reasons of public interest in the area of public health, such as ensuring high standards of quality and safety of health care.

The National Audit of Care at the End of Life does not have Section 251 approval to collect patient-identifiable data without consent, the data collected is pseudonymised and therefore non-identifiable.

What information do we collect in NACEL and why

The information collected is from a range of sources including:

Hospital/ Site Overview: Data collected is commercial data about the organisation e.g., whether the hospital/site has access to a specialist palliative care team. Data is submitted by hospital staff, aggregated to a high degree and does not contain any personal information.

Case Note Review: Data is collected directly from a large cohort of deceased patient’s hospital records/notes by hospital staff. Limited personal information is collected and data is pseudonymised. The data submitted is factual and potentially already accessible via other means – for example a death certificate, coroner court or disclosure as part of the death notification process.

The personal information collected about the patient and those important to them includes:

o   Date and time of death 

o   Date and time of admission to hospital

o   Demographic information, such as age, ethnicity, religion/faith, language spoken

o   Clinical care, including coordination of care, review by the specialist palliative care team, review of nutrition and hydration options, anticipatory medication and holistic needs of the dying person (communication, emotional/ psychological, spiritual/ religious/ cultural and social and practical needs)

o   Clinical care of those important to the dying person, including language spoken and holistic needs (communication, emotional/ psychological, spiritual/ religious/ cultural and social and practical needs)

Quality Survey (Bereaved Person’s Survey): Data is collected from bereaved carers/relatives/others via voluntary participation. The survey collects information regarding the care and support the dying person and the bereaved people received. No personal data is collected in the Quality Survey and the respondent’s contact details are not shared with the Network. No identifying data is collected during this process and there is no way for the audit to identify the bereaved persons’ who have completed the survey. There are no narrative fields therefore no risk of identifiable or personal information being recorded.

Staff Reported Measure (Staff Survey): Data is collected from members of staff via voluntary participation. Feedback is collected from members of inpatient staff who work within the hospital/site outlined in the NACEL submission. NACEL requests the Staff Reported Measure is complete by staff who are most likely to come into contact with dying patients and their loved ones. The survey asks questions about staff confidence and experience in delivering care at the end of life, the support they receive and the culture of their workplace. No personal data is collected in the Staff Reported Measure.

 Additional personal information we may collect, is information received directly from you, for example:

  • When accessing the NACEL Portal, or the Data and Improvement Tool

  • When you communicate with us, for example if you make an enquiry

  • When you register for the NHS Benchmarking Network members’ area or the NACEL Data and Improvement Tool

  • When you attend an event, virtually or in person

  • When you complete any surveys or feedback forms which we send you

  • If you are a member of the following groups:

    • Steering Group

    • Advisory Group

    • Bereaved Person’s Focus group

How we manage the information submitted to NACEL

This section refers to what we do with the data submitted to the NACEL, either as part of the Case Note Review, Quality Survey, Staff Reported Measure and the Hospital Site overview.

NACEL data will be collected, transmitted and stored securely. The NHSBN database is hosted by Midlands & Lancashire CSU. All data submitted to NACEL is saved in the Network’s SQL Database hosted by the CSU.

NACEL data will only be shared under the direction of HQIP. NHSBN will not share any of the NACEL data provided to us with any third parties for marketing purposes. At the end of the NACEL contract, NHSBN will return the audit data to HQIP and this will be deleted from the Network database as required by the contract.

Data analysis is supported by in-house analysts and a subcontracted statistician. NACEL statistical support is subcontracted with a consultant from Statsconsultancy Limited. The subcontracting arrangement is held under a data processing agreement with ELFT.

The data collected will act as a central dataset on care at the end of life, which is currently not available elsewhere. The processing of the NACEL data gives a library of information on the variation on service availability, care delivered to patients and those important to them, feedback from bereaved persons on their experience and lived experiences from staff. This information will be benchmarked and displayed in the outputs, so it can be accessed by local healthcare providers for service improvement activities.

This information will be displayed in several NACEL outputs including:

•       An online Data and Improvement Tool

•       State of the Nation Report

•       A Good Practice Compendium Report

•       A range of Quality Improvement activities, including webinars

•       Dataset to be shared with Care Quality Commission (CQC)

By processing the data to create a range of outputs, NACEL hopes to stimulate improvement at local, regional, national and international levels. No personal data, pseudonymised or else will be included within the NACEL outputs, including the online Data and Improvement Tool. All patient, staff and bereaved carer data will be anonymous.

Commercial data is shared within the NACEL Data and Improvement Tool to provide transparency in the quality of care to support quality improvement. Data will be aggregated and identifiable at an organisational and hospital/site level, depending on how the organisation registers at the start of the project. The online tool will name the participating organisation’s findings, so that comparisons can be made between organisations. Only Users approved by participating organisations in NACEL 2024 will be given access to the NACEL Data and Improvement Tool, in addition to those with third party access (NACEL Steering Group, NHS England, Welsh Government, HQIP, Northern Ireland Public Health Agency and the five Health and Social Care Trusts).

Further information can be found in the NACEL Data Protection Impact Assessment and NACEL Data Flow Diagram.

Please find available to download The NHS Benchmarking Network's Fair Processing Notice.

National data opt-out

The national data opt-out is a service that allows patients to opt out of their confidential patient information being used for research and planning. The opt-out continues to be upheld following the patient’s death. As a provider of services commissioned by the NHS, NHSBN are required to comply with the National Data Opt-out (https://www.nhs.uk/your-nhs-data-matters/). Patients have the ability to help decide how their data is used by the NHS for research and planning purposes.

NHSBN comply with this requirement BUT:

  • it is NHS organisations who must check how the data is to be used before it is submitted to NHSBN (NACEL Case Note Review).

  • NHSBN will remind NHS organisations that they must check to see if the National Data Opt-out will have to be considered for any data collection activities that we are involved in. Patients can make a choice about how their data is used by following this link https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/. Preferences can be changed at any point.

How we manage personal information shared when accessing the NACEL website

We use your Personal Information for providing and improving the NACEL Website. By using the Website, you agree to the collection and use of information in accordance with this policy.

While using our Website, we may ask you to provide us with certain personally identifiable information that can be used to contact or identify you. Personally identifiable information may include, but is not limited to, your email address, name, phone number, postal address, other information ("Personal Information").

Log data

We collect information that your browser sends whenever you visit our Website ("Log Data"). This Log Data may include information such as your computer's Internet Protocol ("IP") address, browser type, browser version, the pages of our Website that you visit, the time and date of your visit, the time spent on those pages and other statistics.

We collect IP addresses solely for monitoring purposes to ensure the integrity and security of our survey platform. Your IP address is a unique identifier assigned to your device when connecting to the internet. The collection of IP addresses is solely for the purpose of monitoring and maintaining the security of our survey platform. Your IP address will not be used for any other purpose or shared with any third parties.

In addition, we may use third party websites such as Square Space that collect, monitor and analyse this type of information in order to increase our Website's functionality. These third party website providers have their own privacy policies addressing how they use such information.

Cookies policy

Cookies are files with a small amount of data, which may include an anonymous unique identifier. The web site may retrieve these cookies from your web browser (for example: Internet Explorer, Edge, Safari, Mozilla Firefox or Google Chrome) each time you visit, so they can recognise you, remember your preferences and provide you with a more secure online experience. Cookies are sent to your web browser from a web site and stored on your computer's hard drive.

We use "cookies" to collect information. You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of our Website.

Generally, cookies are very useful and are a common method used by almost every website you visit because they help to make your online experience as smooth as possible. For security reasons, many websites will not function at all without the use of cookies. Cookies generally do not hold any information to identify an individual person, but are instead used to identify a browser on an individual machine.

If you prefer, you can restrict, block or delete cookies by changing your browser settings but that may mean that the website won't work properly.

For more information about cookies and their impact on you and your browsing visit www.aboutcookies.org.

Service Providers

We may employ third party companies and individuals to facilitate our Website, to provide the Website on our behalf, to perform Website-related websites or to assist us in analysing how our Website is used. These third parties have access to your Personal Information only to perform these tasks on our behalf and are obligated not to disclose or use it for any other purpose.

Communications

We may use your Personal Information to contact you with newsletters, marketing or promotional materials and other information that we consider may be of interest to you. You may opt out of receiving any, or all, of these communications from us by following the unsubscribe link or instructions provided in any email we send, or by contacting us directly.

Accessing your information/contacting the organisational Data Protection Officer

Under the Data Protection legislation, data subjects have the following rights with regards to their personal information:

  • the right to be informed about the collection and the use of their personal data

  • the right to access personal data and supplementary information

  • the right to have inaccurate personal data rectified, or completed if it is incomplete

  • the right to erasure (to be forgotten) in certain circumstances

  • the right to restrict processing in certain circumstances

  • the right to data portability, which allows the data subject to obtain and reuse their personal data for their own purposes across different services

  • the right to object to processing in certain circumstances

  • rights in relation to automated decision making and profiling

  • the right to withdraw consent at any time (where relevant)

  • the right to complain to the Information Commissioner

If you want to find out how to do this or need any further information about how we use your data, then please contact our Data Protection Officer: Tania Palmariellodiviney,

RCI-DPO@Rcigroup.co.uk

You can also complain to the ICO if you are unhappy with how we have used your data. The ICO’s address:          

Information Commissioner’s Office

Wycliffe House

Water Lane

Wilmslow

Cheshire

SK9 5AF

 Helpline number: 0303 123 1113

ICO website: https://www.ico.org.uk

How to contact us

For general NACEL queries, you can contact our NACEL Support Team via phone on 0161 521 0866 or via email: nhsbn.nacelsupport@nhs.net.

The helpline is available from Monday – Friday from 9.00 am – 5.00 pm. 521 0866, nhsbn.nacelsupport@nhs.net.

For further information about how we use your data, then please contact our Data Protection Officer: Tania Palmariellodiviney, RCI-DPO@Rcigroup.co.uk.