In this article, we articulate the opportunity that integrated care presents for using insight from people and populations to design services that meet their needs and reflect their priorities. This includes breaking down siloes within and between organisations to listen to what patients are saying across their entire pathway of care.
The importance of patient insight
The insight we can get from patients, users and the public – from engagement, participation and involvement activities, feedback and surveys or through simply listening and observing – should be central to the business of the health and care system.
An organisation informed by intelligence from its users can:
use insight to improve the quality of services
design better services and pathways based on users’ experiences and expertise
plan services around the population and people’s health and care needs
understand its populations and the place health plays in their everyday lives.
The NHS’s move towards integrated care systems offers an excellent opportunity for local areas to use insight and feedback from patients and users and to co-ordinate that feedback across pathways of care.
As part of our project on integrated care and patient insight and feedback, we have been learning from interviews, roundtables and direct work with six local areas how to understand the full potential of patient insight within integrated systems. We are supporting six sites in an ongoing project that seeks to learn how the points raised in this article can be addressed.
Here we share what we have learnt so far, explore some of the current challenges for gathering insight from patients, users and the wider community, consider where we can get to and how integrated care systems can drive this.
The challenge of terminology
Different terms are used to describe ways the health and care system works with patients, users and the public: patient engagement, involvement, participation, co-production, insight and feedback, market and social research and patient experience data. Each of these has a slightly different meaning, but they all describe different ways of working with users, communities, patients and the public and all have value.
Rather than seeing these as separate functions there needs to be a move to bring the learning together in one place and then, more importantly, effectively shared across organisations and systems.
In this article, we have used the term ‘insight’ to describe the intelligence and information that local areas can collect from patients, users, community groups and the wider public to inform how health care is provided.
Interpreting and acting on patient insight
The health care system collects a huge amount of insight and feedback from users at local and national level but does not do enough to interpret – and more importantly act on – what it tells us.
In 2001, the NHS led the way by introducing national patient experience surveys to all trusts. In comparison with other systems that do not have any national mechanisms for collecting information about patients’ experiences of care the NHS scores highly.
While there are many positive local initiatives to encourage listening to patients, our interviews flagged some challenges for the wider system. Terms such as patient engagement and patient experience have slightly different meanings, but they are both ways of listening to and understanding users of services and the wider public. Too often, however, they are separate functions. For example, gathering information about patient experience is often the responsibility of the nursing directorate of a trust, whereas patient engagement will be part of the wider communications function. Both are gathering insight from users of services and the wider public, but the learning is often not shared.
Furthermore, these functions are often separate from those who can make best use of the information; clearer links need to be made to those who should be using what is learnt whether that be managers or clinical staff.
At present much of the effort in this area goes on collecting feedback from patients and users rather than on using the learning to inform decisions, make improvements and design services. The focus needs to move beyond collection to acting on what the information means for health and care systems and the populations they serve.
Sharing what we learnt
Partners within systems should start to share information, working together on what it means and how to act on it.
At present much of the feedback that is collected from patients is specific to individual services – general practice, hospitals, community services and social care – but there is little understanding of how these services work together for users. Sometimes intelligence collected by individual organisations offers insight on other services. For example, we heard from an acute care provider that had conducted a patient engagement exercise from which it had gathered a lot of insight about primary care. However, there was no mechanism for the organisation to share that insight with relevant colleagues in their local area.
The current national survey programme is also set up to measure experience of individual services – for example through the GP Patient Survey and the Inpatient Survey. This is also true of the Friends and Family Test. It is challenging for national surveys to measure experience across a pathway in a single provider or between several providers. There is a risk that the tools for measuring patient experience continue to fail to capture the full complexity of users’ journeys.
There was a clear sense from those we spoke to that insight from patients and users is often seen as ‘soft’ data compared to other ‘harder’ performance measures such as waiting times targets and financial data. Moreover, insight is not always believed. One leader told us that there are two ways the NHS treats feedback from users, ‘Either they say, “We knew that already.” Or else, “It’s wrong.”’. Moreover, patient and public engagement is still seen by some as something that ‘has to be done’ rather than providing key insight and understanding into local populations and their needs. It is still too often seen as tokenistic.
Insight needs to be seen as equally important to other routinely collected data and become a key part of the intelligence function of new systems. This requires leaders to place sufficient emphasis on listening to and working with their users and to ensure there is sufficient capability and capacity both to process the feedback and to use it to inform decisions, make improvements and design services. Gathering insight needs a range of skills including analytical capability, methodological understanding and communication skills to disseminate effectively what the results mean.
A system-wide move towards integration offers an opportunity to put insight at the heart of health systems by using this information to design better services.
The move towards integrated care systems (ICSs) is the time to address some of the challenges outlined above. Organisations can start working across boundaries by understanding what happens to patients beyond individual interactions with services. For example, areas we spoke with were considering how they might use patient insight to increase their understanding of high readmission rates and what happens to individuals between and across services. Healthwatch England argues that qualitative collections of patient experiences can augment routinely collected readmission data, helping us to understand patients’ views and their wider environment.
In a recent blog, Michelle Dixon, Director of Communications at Imperial College Healthcare NHS Trust, argued that public engagement should be a continuous discussion not a one-off event. Fully integrated systems should consider insight from all the sources available to them – patient and public engagement, patient experience, quality improvement – as part of their continuous conversations with their population. Every conversation is an opportunity for a system to learn, but they must want to listen. It has to be seen as everyone’s business, not just the remit of the patient engagement or patient experience teams.
As new systems are set up there is an opportunity to consider a more strategic approach to patient insight and to begin to break down the false boundaries that can exist in how the health and social care system hears from the population it serves.
It's not just one method
The conversation needs to move from a debate on the right methods for collecting feedback to one about what a range of sources tells us about our users.
A range of methods are available to collect insight, and choosing the appropriate approach may depend on what the information is needed for. For example, organisations may want to know what matters to their population to help them set their priorities, or they may want to create tools for service improvement. No single method can answer everything health and social care systems need to know. Moreover, some methods will be more or less suitable for different groups in society and thought needs to be given to choosing methods that are appropriate both to the question being asked and the people being asked it. There is a need to become more familiar with the range of methods available, from traditional surveys to ethnography to analysing online feedback rather than reaching for the same tools to answer every need. The system should also be looking to how other sectors collect insight and bring innovation in where relevant.
Furthermore, we found that local systems are not always aware of the wealth of information that is already available either locally or nationally. More must be done to make use of what is already known, working alongside Healthwatch and local community groups. This will also avoid duplication of effort and highlight gaps in understanding. In some areas different teams are conducting very similar patient engagement exercises but are not aware of the each other’s work. New systems can start to map what is already known and to join together on relevant work, avoiding duplication.
An opportunity to do things differently
New integrated care systems (ICSs) offer an opportunity for health and social care systems to think differently about how they collect, listen to and act on insight and feedback, moving it from being a ‘nice to have’ to an essential part of how they work.
With growing levels of multi-morbidity, one individual may be in receipt of half a dozen or more visits a week from different professionals. This may affect that patient’s ability to get out of the house and see friends and family, resulting in a deterioration in their mental health. The patients’ experiences of each individual service may be positive and measured as such by the individual organisation. However, there is no opportunity to measure how the patient feels about their care overall. It is only by understanding the whole story that we can redesign services to be more efficient and improve the lives of patients.
As we move towards integrated care, the health and care system has to hear from patients in a more joined-up way. Data needs to be shared more systematically both across and between organisations; partners, including the community, can then come together to plan and design services that are based on an understanding of the populations they serve.
Local government inclusion
The inclusion of local government in integrated care systems represents a significant opportunity to include social care, public health and wider population health, bringing the relevant skills that they have.
The NHS cannot do this alone. Generally, local government has a more direct relationship with its citizens and has a different understanding of insight. Bringing these skills together with the work already done in the NHS will only increase capacity, capability and understanding in the system overall.
There is also clearly a role for patient insight suppliers to provide some of the services needed and it is key that the right market and frameworks are developed so the NHS can intelligently commission additional expertise from these suppliers.
As local areas explore better ways to deliver care, they need to understand that integrated care is fundamentally about the relationship that local care organisations have with their population. Having this conversation together with partners, patients and the public is the only way for it to be a success.