Amy Darlington, Involvement and Engagement Lead for the OneLondon programme, talks about the importance of understanding people's views and expectations about the use of health information. She offers some thoughts on how this might be achieved, reflecting on work currently underway in London.   

Despite the name, the National Health Service is extremely fragmented: thousands of separate organisations work together to deliver health and care services to their local populations. As a result, the information needed to support a person’s individual care or indeed improve services across a wider population, is often simply not available. This, at best, results in frustration when patients are repeatedly asked to tell their story, and at worst, can result in serious avoidable harm.

Health and care systems across the country are working together to improve how services are delivered and experienced – making them more joined-up and patient-centred. A key part of this is about making health and care information more consistent, linked and available to the clinicians, patients and families who need it, when they need it.

As one of the country’s first Local Health and Care Record Exemplars (LHCREs) – designated by NHS England – OneLondon is helping to address this challenge. This programme is helping to meet Londoners’ expectations of a 21st Century health and care system: one that is joined-up and able to harness the correct information in a safe and appropriate way, to drive improvements in care – not only for individuals but for Londoners as a population.

Let’s not make assumptions – let’s talk to people!

Whilst the benefits of joining up information may be obvious to many, we cannot assume that the case has been made more broadly across our population. It is therefore vital that we engage with patients and the public to understand exactly what their expectations are; and ensure we operate in line with these in order to build trust and confidence.

Where to start?

We believe that in order to build trust, we need to understand what people’s expectations are in order to operate in line with them. We need to understand the red lines, what is acceptable and what isn’t, and most importantly how we can meet these expectations in the context of real life. Simple, right? Perhaps not…

Let’s start with what we already know. Understanding expectations of the use of health and care data, commissioned by OneLondon, authored by CurvedThinking and developed in collaboration with Understanding Patient Data, provides detailed insight into what is currently known about people’s expectations and attitudes to the use of health and care data. In doing so, it also identifies the gaps in evidence and our understanding.

Some expectations are clear, others are not  

One of the most notable findings is the strong expectation of the public that their information should be available to clinicians at the point of care to support their individual care.

What’s less understood – as evidenced in the report – is their expectations in relation to other uses of health information, for example, service planning or proactive care. We therefore need to do more explore people’s views about these "secondary" uses.  

Research and engagement to date has tended to focus on the anticipated benefits from data sharing, associated concerns, and how people imagine these could be ‘ideally’ addressed (often without reference to any technical limitations). Largely absent is any discussion of how the public might balance benefits and concerns within the constraints of real world feasibility, and what trade-offs would be acceptable or not.

In addition, evidence is lacking as to what red lines the public feel should not be crossed, however desirable the potential benefit. 

We know where the gaps are, how do we address them?

OneLondon’s approach will be to involve Londoners in a genuine and deliberative programme of engagement to understand their expectations and explore what trade-offs are agreeable, within the constraints of how a health and care system operates.

This autumn, we will mobilise a different type of conversation with Londoners: one that is open, honest and frank, one that doesn’t shy away from the issues and complexities, but which embraces and respects them. We will explore nuances where the current evidence is equivocal. We will then use deliberative engagement methodologies to understand trade-offs and develop recommendations – a meaningful social contract with Londoners.

Working with the NHS and local government across London as well as the Greater London Authority (GLA), and London’s three Academic Health Science Networks, this programme will have significant reach across the capital. We will have a strong focus on engaging with seldom heard and vulnerable groups, as we don't yet know enough about their views, expectations and concerns.

With visible leadership from clinicians, regional NHS executives and the GLA, we will – for the first time – establish empirical evidence of the expectations of Londoners with regards to health information uses. We will work with Londoners to shape ‘the rules of the game’ and to ensure that we proceed in a way which builds trustworthiness and confidence amongst the populations we serve.

Read the report Understanding expectations of the use of health and care data.