Data linkage is key to the digital shift

Lessons from linking patient-level information across health and social care

A key part of making the government’s pledged shift from analogue to digital is moving from paper-based systems (or digital systems that are slow and don’t talk to each other) to one centralised system where electronic patient records can be easily shared to enable timely and appropriate care. In this blog we explore how to get the basics of data linkage right, to lay the groundwork for realising the maximum benefits of this digital shift, across both health and social care.

Why data linkage is important

Information is collected through every interaction with the NHS and/or social care system – be that seeing a GP, attending A&E, having an outpatient appointment at hospital, or a care worker visiting you at home. But when such records are kept separately, it’s difficult to understand a person and their needs as a whole.

Imagine a big jigsaw puzzle: one piece might show a daffodil and another a bunny, so we might guess that the overall picture is about spring, but we don’t know much else. It’s only once we’ve put the whole puzzle together that we can see and understand the big picture. Similarly, when we join together patient information from different sources, we no longer just have snapshots of appointments (separate puzzle pieces) – instead, we now have a better idea of a person’s unique combination of health and social care needs.

To plan and deliver effective health care, particularly in a constrained system, decision makers need to design and implement services which most efficiently meet a population’s needs. Historically, the NHS has focused on managing different health conditions separately. But many people have more than one health need, and there’s complexity in how care is delivered. So, national and local health and care systems need to provide services which:

• recognise the combinations of conditions that co-occur
• enable staff to deliver efficient and patient-centred care
• avoid putting any extra burden on patients themselves.

Having access to joined-up health information is absolutely key to all of this. 

Progress is promising, but more work is needed

Across the UK, there are exciting developments bringing together different sources of information to help understand patient needs and interactions with health and social care services. The NHS has introduced ‘trusted research environments’ – these can be thought of as digital versions of a high-security reading room, where health information is carefully prepared to protect privacy and confidentiality, and anonymised data can be joined together and used for research. research.

While these trusted research environments are promising, they are still at an early stage. Researchers hope that in future they will be expanded to include more and different types of patient information.

Learning from the challenges we experienced

The Health Foundation has recently completed a project linking several different sources of patient-level information from across health and social care. This was part of a larger collaborative NIHR-funded study known as DACHA (‘Developing research resources and minimum dataset for care homes’ adoption and use’). The researchers set out to identify what an aspirational dataset would look like for older adults living in care homes, then brought together information on care home residents collected by care home staff, GPs, hospital doctors and ambulance staff. 

We wanted to link the data in a way that protected patients’ confidential information (noting that care home residents often interact with many different services and have greater or more diverse health and social care needs). We showed that, while not straightforward, it is possible to bring these different puzzle pieces together, and to use the collated information to gain more insight.

For example, the linked data allowed us to identify care home residents’ emergency hospital use – which in turn can help explore the most common reasons for such emergency admissions, and how these differ by sociodemographic characteristics. That information could then be used to inform local service provision or additional staff training needs.

The linking process was difficult and it took longer than expected to combine information while keeping everyone’s information confidential. We reflected on this experience and decided to share our learning to help make such endeavours easier for other teams in future. These focus on shared ownership of benefits and responsibilities across all stakeholders, and optimising data linkage for maximum impact.

Everyone across the health and social care system has a part to play in making good data linkage a reality – from clinicians who input information every time they see a patient, to decision makers who can advocate for processes which will make data linkage easier.

The government is preparing to publish the 10-year health plan, with a focus on creating a modern health service to meet the needs of a changing population. For this to be achieved, it must be possible to link patient-level information across and within the NHS and social care – and it will be vital to realise the benefits of doing so.