Data to benefit patients and the healthcare system: A ￡10billion puzzle

Professor Andrew Taylor is Director of Innovation at Great Ormond Street Hospital and leads the DRIVE unit. In this article, he explains how NHS organisations and our collaborators can put together pieces, so that patients and the healthcare system can benefit from the puzzle of routinely collected data.

Data routinely collected by the NHS is estimated to be worth up to ￡10billion per year. This value is attributed to operational savings, improved patient outcomes and benefits to the wider economy [1]. This calculation assumes that data is collated across the range of NHS services and organisations. However, the concept of a single, national health service does not represent the reality of our digital infrastructure.

Right now, NHS data is held in fragmented ways, as puzzle pieces scattered across the UK. This makes it difficult and time consuming to collate data across patient pathways or the population. We can’t easily analyse data for planning services or developing artificial intelligence tools, for example.

But we can bring together the pieces to get a full picture from data in three ways, whilst also maintaining data security and privacy.

• Hospital digital infrastructure to connect data sources

Using routinely collected data for research and innovation, or audit and service improvement is classified as secondary use of data. This is any use of data other than to directly inform patient care. Hospitals need secure digital infrastructure to extract data from multiple sources and collate the data for these projects, as well as governance structures to oversee them.

The spectrum of what constitutes ‘health data’ is also expanding. ‘Health data’ has mainly referred to electronic health record (EHR) data that is collected during clinical care. However, new platforms will be needed to collate data from other sources, including wearable devices, and external data sets, for example about pollution levels.

• Improving digital skills

Everyone has a role to play in improving the use of data in healthcare. For example, patients who consent to providing more details around their treatment needs and experience. As well as staff who provide comprehensive details in the EHR and work with colleagues to improve the systems for their teams.

But like many other industries, new roles are being created. For examples, staff with data engineering skills and tools are required to manage large data sets. This involves selected and standardising relevant data items, and spotting errors.

• Effective data partnerships

Connecting data sources across hospitals can improve the patient experience and promote data innovation by increasing the amount of data available on groups of patients. Partnerships with external academic, commercial or third sector organisations can also speed up the development of innovations that benefit patients, and health and care systems.

In entering these partnerships organisations must thoughtfully consider several factors. These include: intellectual property, data access requirements and governance, patient confidentiality and engagement, and the organisations capability and capacity to deliver on partnerships. The NHSE Transformation Directorate recently published a guide that outlines these concepts, with helpful prompts for discussion.

If we can bring together this puzzle with the right infrastructure, skills and partnerships, data can contribute it’s ￡10billion worth, or even more. ?

I’m excited to be leading the team forging this path at Great Ormond Street Hospital where we’re taking part in cutting-edge data science projects, and international collaborations with the ambition of improving data science for the benefit of children and young people.

[1] “NHS data worth ￡9.6bn per year, says Ernst & Young.” [Online]. Available: https://www.digitalhealth.net/2019/07/nhs-data-worth-9-6bn-per-year-says-ernst-young/