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Creating a digital HIE passport to help support neurodevelopment

To develop a digital HIE passport that incorporates a red flag scoring system that links directly to a community monitoring pathway so children can enter the system without delay. 

  • Idea
  • 2022

Meet the team

Also:

  • Ben Marlow
  • Florence Walston
  • Lydia Harrington
  • Ahmed Hassan
  • Wendy Rogers
  • Hilary Wong
  • Charu Bhatia

What is the challenge your project is going to address and how does it connect to the theme?

Despite the recognition of the need for longer term follow up of children with HIE the finite resources within the community paediatric practices have been unable to offer this service.  Increasing waiting lists exacerbated by the COVID pandemic mean many of these infants will continue to be unrecognised and will continue to struggle.

Human factor science recognises the importance of making the patient part of the team.  A patient empowered with information of what to expect in his healthcare journey and the ability to recognise early warning symptoms can act as a failsafe in the treatment loop.

We would like to work to identify ways we can empower the parents of these infants to recognise early warning signs by creating digital HIE passport that incorporates a red flag score that can link directly to a community monitoring pathway so these children enter the system directly and without delay.

What does your project aim to achieve?

This digitalised red flag scoring system will help families link directly to a community monitoring pathway which will intern mean that children enter the system directly and without delay to enable support to be provided for these children and their families more quickly.

This system will also address many inequalities to follow up by empowering families to take ownership of this.

Teachers can also help/feed into the assessment process as there will be an assessment tool available for parents to generate a code to granted teacher access to this tool. Better health outcomes have been reported when education and health care care systems work together, which this app will allow.

How will the project be delivered?

This system will require testing to analyse risk versus benefit. Therefore this app would initially be rolled out alongside the normal HIE follow up pathway.

The EoE neuroprotection steering group will lead on this project many of whom have extensive experience in research and quality improvement projects. The project will be rolled out in three phases.

Phase 1 of this project will:

Phase 1           Identify follow up needs

Identify parent friendly and teacher friendly tools

Generate threshold of red flag scores identified from these tools

The thresholds for red flags will be investigated on a smaller scale to identify their true effectiveness, sensitivity and specificity, impact on workload and benefits.  The user friendliness of these tools for parents and teachers will also be assessed at this stage.

How is your project going to share learning?

We plan to share widely by publishing and presenting our finding in relevant journals and conferences.

Concepts of this app are likely to be transferable for other Q Community members to develop into other specialties.

How you can contribute

  • Keen to hear from any collaborators who have experience of working with similar technologies or who would like to assist with this project.

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