Privacy notice – Digital Best Start (DiBS) Age Based Messaging

This privacy notice relates to the Digital Best Start (DiBS) Age Based Messaging (ABM) Pilot, supporting the Best Start in Life initiative which aims to help parents give their children the best possible foundation for their health and wellbeing. It also supports the My Children Service as outlined in the 10 Year Health Plan for England: fit for the future. 

Prior to committing to a national roll-out involving a full build and implementation, DiBS is trialling messages in a focused pilot of 500 participants in partnership with Essex Child and Family Wellbeing Service (ECFWS). This pilot allows DiBS to assess the value of each message, along with user behaviour in an "as-live" setting, whilst minimising build costs and financial commitment. 

This privacy notice is designed to clearly explain how we handle your personal information, including how we collect, use, store and protect it. It makes sure you know exactly what is happening with your data and how you can control your legal privacy rights. 

Alongside this notice, you should also read the NHS App terms of use and cookies policy.

NHS England (NHSE) is the central administrative body responsible for overseeing the budget, planning, and delivery of healthcare services across the English NHS. It allocates government funding, sets clinical priorities, and directly commissions specialised services like general practice (GPs), dentists, and prison healthcare. 

Our work supports the NHS to deliver high quality services for patients and best value for taxpayers. Amongst our other functions, we lead the digital transformation of healthcare infrastructure.  

To help with this we use data and information from any organisation that provides health services to the NHS, including NHS Trusts, NHS Foundation Trusts, GP Practices and other primary care providers and local authorities. 

Read more information on who we are and what we do.

We use your data to send targeted messages, based solely on the age of your baby. To do this we collect the following information about you:  

• Mobile Phone Number: used by NHS Notify to contact you if you can’t be reached via the NHS App.   
• Date of Birth (DoB): we use your DoB to check you're eligible to receive messages. We also use your child's date of birth to check which messages should be sent to you.  
• Age: your child's age is inferred from their date of birth.  
• NHS Number: you and your child's NHS numbers to identify you and check you’re eligible to receive messages. We also use your NHS number to send messages to you using NHS Notify. 
• Relationship to other individuals: used to validate the relationship between you and your child.  

• Organisational Data Service (ODS) code: used to determine whether your child is registered with a GP. An ODS code is a unique reference number issued by NHS England and is required to access national NHS systems.  
• Flags:
  • Sensitive flag (S-flag): used to identify records to be excluded from the pilot because they are restricted. Information about why the S-flag has been set is not used or processed. 
  • Invalid flag (I-flag): used to identify records that have been flagged as invalid and should not be used. 
  • Opt Out flag: used to check whether you’ve opted out of the pilot. 

This information is provided from the following sources:  

• ECFWS: to identify an initial cohort of pilot participants to message.  
• NHSE Personal Demographic Service: for demographic data supporting the creation of a messaging cohort.  
• Qualtrics: to identify individuals who have volunteered to participate in user research sessions and individuals who have opted out of the pilot. 

The information is shared with us in accordance with the principles outlined within current data protection legislation. 

• NHS Notify: used to send out messages on behalf of DiBS.  
• NHS App: messages to users as part of this pilot will be delivered via the NHS App.  It also allows mobile users to receive push notifications from the app to inform them when they have a new message. The NHS App is the way people will receive messages from DiBS ABM, with SMS as a fall-back option. 
• NHS Analytics and Qualtrics: used for user research. Message performance data will be used to track which messages have been opened as part of service user research and continuous improvement. We may use your data to contact you and ask if you’d like to take part in additional user research sessions so that we can identify improvements to our service. 

We may share pseudonymised data from user research findings with other teams in NHS England. This is done to improve our services. Pseudonymised data is information where direct identifiers (like names or addresses) are replaced with artificial identifiers or codes (like a reference number). 

We may share anonymised data, such as message read rates and pilot uptake rates, to improve our services. Anonymised data is information from which all personal identifiers (like names, addresses, or specific IDs) have been permanently removed. 

The legal basis for the processing of this information is met by Article 6(1)(e) of the General Data Protection Regulations (GDPR) as the processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in NHSE. This is known as the public task basis and is derived from Sections 1(H)(3)(a) and 13(H)(2) of the National Health Service Act 2006.    

NHS England collects data for audit purposes as directed under the NHS App Directions 2023. 

The common law duty of confidence is met as there is a statutory basis for data collected under the above direction, for both directing and directed organisations.  

For the services provided by health care organisations (for example, GPs) on the NHS App, where confidential patient data is shared, this is done at the direction of the healthcare organisation for direct care purposes based on implied consent of the patient.  

You can opt out of continuing to be part of the pilot at any stage by following the directions provided in the messages you receive from DiBS.  

Your data is stored securely in NHSE's internal systems. These systems are hosted on accredited UK-based servers compliant with the NHS Data Security and Protection Toolkit and ISO 27001 standards. 

Data is encrypted with access restricted to authorised staff and only on a need-to-know basis through role-based access controls and multi-factor authentication.  

Data that you provide to Qualtrics is stored in Germany and Ireland and meets the UK’s data protection adequacy requirements as being compliant with the UK GDPR. For more information on how Qualtrics processes your data, please refer to the Qualtrics Privacy Notice at Qualtrics Privacy Notice. 

Information is processed via secure transfer and only to key professionals who have a clear and legal need to see it. All staff are required to undertake regular training and comply with policies and procedures around Data Protection, information security, confidentiality and the safe handling of information. The data is used in such a way that personal identifiable details are removed as soon as possible in the process of analysis. 

Personal identifiable data will not be disclosed to anyone other than those processing the data for the above purposes without permission, unless we have a legal reason to do so, for example disclosure is necessary to protect a person from suffering significant harm or necessary for crime prevention or detection purposes.  

Your data is only retained for as long as it is needed. For DiBS your data is stored for the duration of the pilot, at which point it is removed from the servers and deleted. 

In addition to DiBS retention of personal data, the other organisations involved in the pilot have different retention periods, these are: 

• NHS Notify: your data is stored 18 months from the date of creation, to facilitate enquiries from end users and patients. 
• NHS App: your data is stored for the duration of your lifetime with the NHS Login service. This is to support analytics and provision of management information and dashboards.  
• Qualtrics: your data is stored for the duration of the pilot, at which point it is deleted. 

User research data containing personally identifiable information will be retained for 2 years and disposed of after use.  

We may collect qualitative data from user research sessions. This data is pseudonymised and held for 10 years after use before being disposed of. 

Under the UK GDPR and the Data Protection Act 2018 you have a number of rights to control what personal information is used by us and how it is used by us.  

You have a right to: 

• know how and why your data will be collected, processed and stored 
• request a copy of your personal data 
• correct errors or omissions in your personal data 
• to ask us to restrict our use of your personal data (for example, if you think it's inaccurate and needs to be corrected) 

For user research activities and your involvement of the DiBS Pilot, you also have the right to: 

• withdraw your consent 
• ask us to delete your personal data 
• get a copy of your data in a structured, commonly used and machine-readable format 

For information held by NHS England, requests may be made in writing, by email, or by speaking to us at NHS England » NHS England as a data controller. 

For your rights in relation to your NHS App Messaging Service data, see the NHS App privacy policy 

For advice about data protection issues, you can contact the Information Commissioner’s Office (ICO). 

We reserve the right to amend this Privacy Notice at any time and will keep it under review. If we do make any changes, we will post the current version to our website at this address.