Digital Health Passport

Sara Nelson, Programme Lead, Children and Young People’s Programme, Healthy London Partnership

Queen’s nurse Sara Nelson leads the Children and Young People’s Programme at Healthy London Partnership - a collaboration between the capital’s health and social care system that aims to make London the world’s healthiest city

Sara also sits on the governing body of Bromley’s Clinical Commissioning Group (CCG).

I lead the asthma programme for children and young people in London, which is trying to create a social movement for change. As part of our work, we've developed some standards, plus a supporting toolkit.

Parents told us that they were fed up of having to give the same information over and over again, as it didn't seem to be shared across the system. Many children and young people also didn't have an asthma management plan - or if they did, they often had three: from the school, the GP and the hospital, which could all be quite different. And we know that those who have a plan in place are four times less likely to need hospital admission.

We decided to create a digital health passport and during that process, how things were coded became an issue, with clinical commissioning groups, general practices and hospital trusts across the capital using different methods. Last summer I approached the Professional Record Standards Body (PRSB) for help and we started working together at the beginning of this year. Funding is a challenge, but my aim is to create an asthma clinical standard that includes agreed coding, so we're all collecting the same data and can make comparisons, with systems that talk to each other. It will mean that patients and their parents are much more in control.

I've also attended a PRSB workshop on clinical referral standards that was very interesting, with a diverse group of people coming together to share ideas and agree a common way forward. It is really important nurses' views are included. Quite often, we can be consulted at the last minute, with many decisions being medically driven. Nurses need a place at the table to make sure products are developed that are useful to nursing staff on the ground. If you haven't been involved in how it's developed, you don't get that buy-in.

Sara Nelson
Programme Lead, Children and Young People's Programme, Healthy London Partnership

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