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In November 2016, NHS England published Healthy Children: Transforming Child Health Information, demonstrating that more accessible child health information supports parents and professionals in the direct care of children and young people, and how that same information can be used to promote their health and wellbeing.
The aim of the strategy is to improve interoperability and the exchange of important pieces of health information to support 2 main objectives:
- Knowing where every child is and how healthy they are
- Appropriate access to information for all involved in the care of children
The exchange of child health information to improve direct care is constrained within the NHS, as most information is still paper based. This limits what can be achieved in modernising service delivery and improving the responsiveness of services to children's needs.
Our vision is to create a step change in the way information and technology are used, providing new opportunities for collaboration between health and care professionals and the families, children and young people receiving care.
About the Healthy Child Programme
The Healthy Child Programme is an NHS-wide, preventative service that provides families with a programme of screening, immunisation, health and development reviews, supplemented by advice around health, wellbeing and parenting. It's offered to all families with a child in England and they are supported in understanding and documenting the pathway of care through a booklet they are given known as the Personal Child Health Record (PCHR), sometimes known as the red book.
The services offered and documented in the PCHR form a series of health events for all children, which are intended to promote:
- strong parent-child attachment and positive parenting, resulting in better social and emotional wellbeing among children
- care that helps to keep children healthy and safe
- increased rates of starting and continuing breastfeeding
- healthy eating and increased activity, leading to a reduction in obesity
- prevention of some serious and communicable diseases
- readiness for school and improved learning
- early recognition of growth disorders and risk factors for obesity
- early detection of - and taking action to address - delayed development, abnormalities and ill health, and concerns about safety
- identification of factors that could influence health and wellbeing in families
- better short and long-term outcomes for children at risk of social exclusion
The key health events in the Healthy Child Programme are being standardised across NHS systems, which will ensure that families, children and professionals will have digital access to the same information. This will record the interventions that a child has had in the Healthy Child programme pathway, and where follow-up services may be required.
About Digital Child Health
The Digital Child Health (DCH) programme was created to support the vision in Healthy Children: Transforming Child Health Information.
The first step in providing modern, responsive services for children is to ensure that key health information (known as events) can be shared appropriately with all those involved in the care of a child. This is done by introducing standards and infrastructure supporting that information exchange and the first area of service delivery we are working with, to promote interoperability is the Healthy Child Programme.
We are working with colleagues across health, care and information technology to redesign information services to:
- support personalised care
- promote the offer and uptake of preventative programmes
- provide the foundation for integration across the domains of health, social care and education
Find out more on the NHS England website.
What we're doing
The DCH programme will change the way information and technology is used. Between now and 2020, a number of improvements will be made in a phased programme of work.
- healthcare professionals don't always have access to relevant health information
- personal child health records (PCHR) are still largely paper based - this is known as the Red Book
- some services are still reliant on paper-based transfers
- there's limited capability to manage children unregistered to GP practices, and to offer them preventative services
- there will be standards in place for exchanging Healthy Child Programme information
- there will be an interoperability layer for a digital personal child health record service (market enabled)
- interoperability will start to replace paper processes
- core child record datasets will be available in professional systems
- National Failsafe Management will identify when children are outside the care of the usual agencies and when they are missing preventative programmes of care
The benefits of Digital Child Health
Benefits for professionals include:
- appropriate access to real time information at the point of care, helping to provide a better care experience for children and their families
- a view of child health information at the point of care
- the ability to record information about a child or a young person and to publish to those in the extended network of care
- up-to-date health events available in their own health record systems, without needing to access other systems
- a digitally improved failsafe management service to alert preventative programmes of care when an intervention is due or has been missed
Benefits for parents include:
- access to information so that health and care choices can be made
- an online record of their child's health and development
- ownership of the wellbeing of their child through links to guidance on healthy choices and preventing avoidable poor health
- the ability to share their health and wellbeing information with professionals
- being able to set preferences for information sharing and to see who subscribes to this information
Benefits for commissioners include:
- knowledge that children under care have received the appropriate health interventions to keep them healthy
- failsafe management services that will give assurances for safeguarding children
- the ability to analyse data and intelligence to make service improvements and modifications
Benefits for providers include:
- an information service that underpins the needs of health and care services
- the ability to offer digital services to parents, children and young people, which allow them to take ownership of their own care
- a choice of IT systems that will enable information to be exchanged across an extended network of care
How it will work
This programme will digitally enable the child health care management approach across England, across care professions and in key care settings to help address risk areas and variability in how care is given.
It will establish the requirements for enabling the sharing of important events in a child's health pathway from pre-birth to 19 years. This will enable those involved in the care of a child to see appropriate information at the point of care, improving the patient experience and empowering professionals to make the best decisions.
It will also provide an additional failsafe function where a potential event is not acted upon by highlighting these missed events to all professionals and the patient.
These changes will provide high quality, relevant, reliable information, and public health professionals will have access to more comprehensive and up-to-date datasets when the programme completes in 2020.
The service will:
- connect primary care, child health services, school services and maternity services, allowing them to exchange event information
- enable real time access to data through electronic personal child health records, allowing parents, children and carers to manage the health of the child interactively
Regional areas may choose to set up a similar local service to the national service, to share information with other areas of health. Any local services sharing child health data will need to comply with the standard formats for data sharing being used at a national level.
If you have any questions or comments about the strategy, please email the Digital Child Health team at firstname.lastname@example.org
The Digital Child Health (DCH) team is in the early stages of design and technical development. Discovery and alpha work is being carried out by NHS Digital in collaboration with a wide range of stakeholders.
We are seeking participants to support a new and exciting child health services project. GPs, practice managers and practice administrators are invited to shape the future National Failsafe Management Service. This service is part of the wider National Events Management Service, which aims to ensure that all children in England receive the standard programme of care defined by the Healthy Child Programme
The National Failsafe Management Service (NPFMS) is a digital system for population tracking and screening.
The National Events Management Service (NEMS) is a national service implemented on the Spine, allowing for patient event messages to be published and distributed from one system to another.