Integrated care and the complexity of ordinary lives

Alongside our integrated care briefing, Gemma Hughes looks at why community-based integrated care initiatives are repeatedly disappointing and, using research of integrated care in situ, makes the case for an alternative perspective.

Blog post

Published: 18/11/2019

Please note that views expressed in guest blogs on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.

Community-based integrated care initiatives have repeatedly disappointed expectations of reducing emergency hospital admissions. The Nuffield Trust has evaluated more than 40 such initiatives, including the recent Age UK Personalised Integrated Care Programme. These disappointments date back to at least 2012 (when I was working as an NHS commissioner), when the evaluation of the Department of Health integrated care pilots was published.

Evaluations of integrated care generally compare the outcomes for patients targeted by the programme with the outcomes of a similar group of people experiencing ‘usual care’, assuming that integrated care will have a detectable effect on the people targeted, and that usual care is clearly distinguishable from integrated care.

Alongside a new briefing published this week looking at why such evaluations aren’t very successful, in this blog I make the case for an alternative, complexity-informed perspective. One that understands outcomes as emerging from a dynamic set of circumstances rather than linked in a linear, causal relationship to interventions.

Instead of just asking traditional evaluation questions about the effect size of the intervention of integrated care on hospital admissions, a more nuanced understanding can be achieved by asking: what combination of influences has generated this need for integrated care? What does integrated care contribute to the outcomes of interest? What are the unintended consequences elsewhere in the system of integrating these services?[i] Methods to address these questions include detailed, narrative research studies of integrated care in situ. 

Living with multiple long-term conditions

I took an ethnographic approach [ii] in my doctoral research, which gave me insights into the complexity of the personal situations of intended beneficiaries of integrated care. I learned about the work people do to manage their multiple conditions, and the intricate networks of support they exercise in their daily lives. I was challenged to think differently about the circumstances and outcomes services seek to change.

People targeted by integrated care programmes because of their high risk of hospital admission typically have multiple long-term conditions. Some, though not all, will be elderly, and some will be nearing the end of their lives.

During research with such people in their homes, I noticed the painstaking work involved just with organising the medications – pills, inhalers, creams and drops – prescribed for a combination of conditions and symptoms. I watched as one research participant decanted a combination of tablets from sealed packets into easy-to-use plastic tubs from his kitchen. He preferred to do this rather than make use of the pre-prepared dosset boxes the local pharmacist could have provided.

Paying attention to this kind of mundane detail showed how people chose to avail themselves of some of the available resources, and not others.

I also became aware of the weight of history behind the particular living circumstances of older people, and their ensuing personal networks of support. I listened to their life stories: the jobs they had worked at, wages earned, marriages made and children born. Their histories shaped their current circumstances.

The resulting particularity (and mundane details) of where and how they lived – in a house or flat, downstairs or up, near relatives or shops, on a bus route, in a borough with well-resourced services or not – enabled them to manage at home despite multiple health conditions.

However, when these circumstances changed, the precarious nature of some people’s ability to manage alone became apparent, and hospital admissions more likely. The outcome of managing (or not) at home emerged from a combination of choices, actions, resources and support. 

A complexity-informed approach to integrated care

A complexity-informed approach involves thinking differently about interventions and outcomes. Changing outcomes for people considered to be at high risk of hospital admission is not just complicated, it is complex. The difference between complicated and complex can be explained by comparing a very complicated process (launching a space rocket) and a complex process (raising a child). Launching a space rocket is a vast project requiring significant coordination and expertise - but which can be broken down into different activities and repeated with reasonably predictable results. Raising a child on the other hand is a complex, dynamic process, hard to attribute outcomes for the child to parenting input or social context; the experience of raising one child does not predict outcomes for another[iii].

Instead of thinking about integrated care programmes as a series of extremely complicated, but manageable, inter-related projects, we might want to think about the complexity of the situations we are trying to change, and how outcomes emerge (or not) from a set of ever-changing circumstances.

These circumstances include the development of integrated care as a feature of that complexity. From this perspective we can see that integrated care might not work to achieve predetermined outcomes for patients because of inherent complexities of both the intervention and the system.

The NASSS framework (nonadoption, abandonment and challenges to scale-up, spread and sustainability) has been developed to help us think through and assess such complexity. This evidence-based, theory-informed framework, is being developed to identify and address key challenges of planning complex interventions.

The benefits of this approach are that we can assess complexity, not just of interventions but of the systems into which they are being introduced and the interplay between system and intervention. If we can identify domains of complexity, and assess the relationships between those domains, we can start to plan how to manage, and, to in some circumstances, reduce complexity. 

Such a perspective enables us to understand that integrated care is just one factor in the mix of circumstances that enable people to live with multiple long-term conditions. With a more nuanced appreciation of which of these circumstances are amenable to change, and which are more intractable and unpredictable, we have a better chance of offering more effective kinds of support.

Dr Gemma Hughes is a Health Services Researcher at Oxford University  

With thanks to Dr Chrysanthi Papoutsi for comments on an earlier draft of this blog.

[ii] Karen O’Reilly provides a great overview of what this involves on her blog

[iii] Adapted from Glouberman and Zimmerman, 2002 with thanks to Greenhalgh, 2019. 

Please note that views expressed in guest articles on our website are the authors' own and do not necessarily reflect the views of the Nuffield Trust.