Lost in translation: Can we design self-management support that delivers better value to people and systems?

A couple of weeks ago I was lucky enough to be in Tokyo. Tokyo is an amazing city; it has wonderful sights, a fascinating history and culture and, interestingly, row after row of karaoke bars! But this isn’t a blog about a dream vacation, I was there to present at the 33rd International Society for Quality in Health Care (ISQua) Annual Conference.

On the flight over I read about how Japan shares similar health care challenges to many developed countries; in a nutshell it is under severe stress and its sustainability is under question. Ring any bells?

Doing more with less has been the rallying cry for the NHS for a while now. One strategy for creating a more sustainable, high quality NHS is to better involve people in their own care. And a key component of this is gaining a deeper understanding of the best ways to approach self-management support. Self-management support is the formal and informal assistance given to patients with long-term conditions to encourage daily decisions that improve health-related behaviours and clinical outcomes, and it’s this topic that I was invited to present on.

So why is it important? Well, the evidence tells us that supporting patients with long-term conditions to self manage their health can improve clinical outcomes and has the potential to lead to more cost-effective use of services.

But when it comes to this important area of care, reality falls woefully short of the policy aspirations. Services often rely on a ‘one-size-fits-all’ approach. Interventions and approaches are influenced by professionals’ clinical goals and biomedical perspectives. And, while much self-management support focuses on information provision, skills development and motivation, the barriers to effective condition-management and living well with long-term conditions commonly lie in people’s broader social environments. This reveals a mismatch: while individuals face their own challenges and have very personal and socially embedded norms, much support for self-management is delivered in standardised ways.

So how can we overcome this? The strong message from research so far is the importance of a broader, more holistic approach to bridge the gap between policy aspirations for more person-centred care and current practice. Too often we start with ‘what it should look like’ rather than taking a step back, asking why and understanding what we want to achieve for people and systems. This means involving service users in the design.

A critical first step is to move away from focusing on supporting people to manage their medical conditions well, to a broader purpose of supporting people to live well with their conditions. It’s a subtle difference in language, but the latter seeks to ensure that people have genuine opportunities to do what matters to them. In essence, it means that the primary purpose should not be rooted in measuring and monitoring biomedical markers.  

We also need to understand which self-management outcomes matter to patients. Only then can we design interventions which encapsulate the goals and aspirations that matter, leading to a greater commitment and engagement in self-care.

So, which outcomes matter to patients? People want to live the life they wish and stay as well as possible for as long as possible, and to have the knowledge needed to feel in control of their condition. But this is only one perspective – we also need to factor in the outcomes that matter to other stakeholders, including those responsible for delivering them. When the outcomes considered important by all stakeholders are clear and transparent, only then can services be commissioned and designed which incorporate meaningful measures to truly assess success.

Given the fiscal constraints service providers are facing, it's also essential to understand the value that people place on self-management interventions. This will help to make trade-offs in design and improve the likelihood that resources are targeted to optimise commitment and engagement. So, what is valued? People with long-term conditions value interventions that are:

• shorter and less frequent
• delivered by a doctor or a nurse
• delivered at the GP surgery or at home
• involve them in the decision making process
• individual based rather than group based
• face-to-face rather than wholly delivered through technology.

Given this, and policy moves towards greater use of technology and promotion of peer support networks in supporting people to self-manage more cost-effectively, it makes sense for interventions to be incorporated initially into routine primary care visits. At the same time, patients need to be given the confidence to engage more with peer support networks and technologically driven support tools further along their journey. Greater upfront investment may, therefore, generate better long-term outcomes.

Ultimately, there is no silver bullet. A one-size-fits-all approach is likely to be inefficient and potentially wasteful in terms of resources, people’s time and population health gains. But refocusing on purpose, measuring what matters, and paying attention to what people value can lead to services that meet the patients’ preferences while remaining effective, cost-effective and affordable.

Now if only I had come up with a song to encapsulate all this I could have pitched up at the numerous karaoke bars in Tokyo and sung it to the tune of 'I Wanna Dance with Somebody'. Or, better still, I could sing it at next year’s ISQua Conference in London. Watch this space! 

Darshan Patel is a Research Manager at the Health Foundation