10 April 2017


The digital child health strategy information standard

Our vision: A single online record of a child's health and care history


The PRSB is working with partners in health, education and social care as well as families and parents to create a single online picture of a child's health and care history.

The aim is to replace the current mix of paper and electronic records held in different places with a single digital record. This will contain standardised information that is available at the point of care, so that people experience services that are more joined-up, safer, better quality and more timely.

Almost 70 professionals, parents and IT system suppliers attended the first child health events workshop, which took place last week (5 April) at the Royal College of Physicians in London.

Bringing a range of professional expertise and personal experience to the table, the group discussed the headings and content for the digital child health strategy information standard.

The PRSB has been working in partnership with NHS Digital's child health programme to help implement NHS England's digital child health strategy, and recognises the need for a multi-disciplinary approach.

From community care like midwifery and health visiting, to hospital admissions and GP visits, children see a wide range of health professionals, all of whom will be responsible for recording information about their health. This becomes even more complex for children with extra needs, who may also be seen by social care professionals, therapists, secondary care and family nurse partnerships. By liaising with both parents and professionals, we can get a clearer idea of what information needs to be recorded for each sector in order to ensure a joined-up approach to healthcare and records.

Kicking off the discussion, Dr Andy Spencer, chair of the information for quality committee, Royal College of Paediatrics and Child Health, said the project aimed to 'get information right' to provide better care and reduce variability in outcomes.

He went on to outline the project objective: to develop a set of requirements for community child health records which can support the healthy child programme, an early intervention initiative by government to prevent medical problems and issues before they happen.

Other speakers included Dr David Elliman, community paediatrician at Whittington Health, Professor Helen Bedford, professor of children's health at University College London and Great Ormond Street Institute of Child Health, Martin Orton, director of delivery & development at the PRSB, and Alison Golightly, maternity & child health information consultant at NHS Digital, who is responsible for creating the digital child health strategy.

Speaking at the event, Alison said that knowing where every child is and how healthy they are is integral to the digital child health strategy. However, it will require collaboration between different groups and needs to be taken one step at a time. The child health events workshops are the first step in determining standards for the information that needs to be shared between professionals and parents. During the workshop, the group discussed the information surrounding child health events that needed to be recorded, and the best ways this could be done.

Covering topics such as feeding, birth weight and factors that could affect a child's health during pregnancy, the group discussed appropriate headings, as well as the quality and type of information that needed to be recorded for the different people involved in a child's care.

The group established that language is really important for defining headings, to avoid confusion or misrepresentations. Parents in the group also pointed out that terminology needed to be appropriate for both clinicians and parents, so that shared records were clear to everyone who was involved in a child's care.

All attendants agreed that clear records were essential to their work, and could benefit all aspects of the health and social care system.

The views expressed by participants in the workshop will inform the development of standards for recording a child's birth and early development history. The first of three online survey consultations will go live in May 2017, with the second and third workshops for Child Health Events taking place in June and July respectively. The final report should be delivered in September before it goes out for endorsement, and is likely to be published in late 2017/early 2018.

Read about the digital child health information standard or contact info@theprsb.org or read NHS England's strategy, Transforming child health information.

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