Innovation for better care, 75 years in the making

Information about a patient is collected every day for healthcare professionals to look after them. This includes information about when they were admitted to hospital, the results of their tests, their diagnosis, and the treatments they receive.

75 years ago, this information was written on paper and bound away in large record books once a year. Nowadays, this data is stored digitally in the Electronic Patient Record (EPR) and the GOSH Digital Research Environment is a unique resource that allows secure access to data for research and innovation.

GOSH has information dating back to when records first began. There are hundreds of millions of data points. Researchers, clinicians, and industry partners can securely access information that they need to find new ways to improve treatment and care. Professor Neil Sebire, Chief Research Information Officer, and Ali Toft, Allied Healthcare Professional Information Officer discuss how their roles support digital innovation in the NHS.

Ali: When the right professionals can access information at the right time, they can provide better care. It’s also important to empower patients and carers to be able to manage their health and care. Often children and their families or carers will see many different healthcare professionals who may be at GOSH, or closer to where they live, so being able to securely and easily access information is important for continuity of care.

Neil: Access to data is important for a patient’s care and for all future patients. Data can uncover hidden trends in diagnosis, treatment and care to make improvements for them and everyone that comes after. This is particularly important in paediatric rare diseases where there are fewer patients with that condition seen at a hospital, or even that country, so we need to link data across borders.

Neil: I hope we can develop new technologies that can ‘read’ images, for example of cancer cells, generating thousands of important measures that wouldn’t be possible for a human to collect. With the help of artificial intelligence, we could rapidly sift through the data to find more accurate ways to diagnose a patient or predict what treatments they may need.

Ali: In the next 75 years I hope to see more data platforms that can speak to each other so that we can provide seamless care for patients no matter if they are at home or in the hospital. In my role as an Information Officer, I engage with allied health professionals on digital projects at a local, national and international level. Being a clinician can be difficult and so can gaining digital skills, so I hope to see more support for these types of roles.

It requires collaboration to introduce new technologies in healthcare. This includes technologists and non-clinical staff that understand how to structure data, build and manage software, and clinicians that understand the implications of data findings on patients’ care and the challenges faced by their teams. It is also thanks to funding from the GOSH Children’s Charity that GOSH can implement our world-lead digital infrastructure.

We are excited to see how the NHS evolves over the next 75 years to harness the power of data to improve and discover new ways to diagnose, treat and care for children and young people with complex health conditions.