Should we prioritise outcomes for the system or outcomes for individuals when providing services for people with long term conditions?

Our Resource Centre content managers Petrea Fagan, Anya de Iongh and Julie Fenner - discuss the importance of looking at not just looking at what people want when it comes to person-centred care, but also the different reasons why they might want it.

When talking about care for people with long term conditions, we suspect that there is actually a lot of consensus in the ‘what’ of modern healthcare.  We challenge you to find a patient, carer, health care or other professional who doesn’t think that more effective care provided closer to home and more appropriate use of hospitals through fewer or shorter admissions and better condition management is a good idea. 

But why different people – be they service users, clinicians, managers or commissioners – want this can vary enormously, as we each prioritise different potential benefits, from cost savings to clinical outcomes, to patient experience.  The real challenge lies in determining which of these benefits is the primary outcome that we are trying to achieve – because the outcome we want will inevitably influence the process we use to achieve it.

Let’s take two examples, one from a paper on Modelling patient behavior to improve self-management in diabetes  and one from the Personalised care and support planning handbook developed by NHS England and the Coalition for Collaborative Care.

The paper on Modelling patient behaviour takes as its premise that non-adherence to self-management regimens – both medications and lifestyle changes – is a major and costly problem.  Whilst it provides a good exploration of why people don’t adhere to their regimens, and some helpful suggestions for tackling barriers to self-management, its focus is on compliance with a view to reducing service utilization.  There is no attempt to draw a link between clinical outcomes and the outcomes that tend to matter to people – the impact of their health on their wider life and everyday activities such as being able to get about, being able to work and enjoying time with friends and family. Outcomes determined by the patient are completely absent. 

Now let’s look at an example from the Personalised care and support planning handbook:

The example above combines both personal outcomes for the patient with health outcomes that have an impact on the system.  Not only are there clear health aspects to the plan, but the social (weekly walking group) and day to day issues (walking up stairs) are also addressed.

So should the NHS be working towards outcomes for the system – reduced service utilization leading to lower costs – or outcomes for the individual – better quality of life and increased satisfaction with care?  Clearly system outcomes are important – they include clinical outcomes for patients and sustainable use of resources.  But we would argue that outcomes for the system should be seen as the downstream consequences of achieving the outcomes that are important to people, and not as objectives in their own right.

In person-centred care patients are seen as a ‘whole person’ and the role of health services is to give the treatment and care that enables people to achieve the outcomes they want within their wider lives.  If we define person-centred outcomes as our primary objective, it changes how services need to work. 

Firstly we need to recognise that people don’t just identify outcomes that are important to them and that are dependent on their health in health appointments, they often talk about them when they are in contact with a range of other services.  Wherever these outcomes are identified, they need to be shared across the individuals, teams and agencies working with the person, so that everyone is working with a shared purpose. 

The next step is to embed an approach that supports people to self-manage in the design of services.  That means not just embedding it in the routine practice of health professionals from all disciplines, but considering what other mechanisms are needed to support self-management.  Some health economies are already investing in health coaching based outside the NHS. 

And finally we need to recognise that clinical services are not the only services that support people’s health.  Research has shown, for example, that peer support can be particularly effective in helping people adapt their behaviours and manage their own health.  Some commissioners have already recognised the importance and potential of the voluntary and community sector in maintaining people’s health and are investing in ‘health navigators’ to connect people receiving healthcare into wider networks in the voluntary and community sector that can support them. 

These changes are not straightforward.  They involve changing how agencies work so they not only share information but are working towards shared outcomes.  They involve changing the practice of health professionals and the services they work in.  And they involve changing how we invest in services to include the role of the voluntary and community sector.  If person-centred outcomes are our objective, then the system’s goals may not only be about clinical outcomes, service utilization, cost and sustainability, but might ultimately also include the social capital of local communities. 

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