Self management in chronic disease: yes, we can?

I was privileged on Thursday this week to be part of a (very large ) event run by Herts Valleys Clinical Commissioning Group, on their commissioning strategy, one of a series of events the CCG is running to get their strategy right. And I have to say, the passion and engagement in the room from several hundred people (we were in a big venue, and it was jam-packed solid) was palpable.

We got talking in the workstream on Older People and Complex Care, led by Dr Anne-Marie Essam, about self management and about the possible role of the behavioural sciences. A lot of work on self-management nationally and internationally has not delivered for a range of reasons. Yet Diabetes UK, Macmillan Cancer and even the early 1990s work on self-management for people with HIV by the US National Association of Social Workers demonstrates that it can be done and can work.

This tempts us to put self-management into the too difficult box, like the sigh and slump of shoulders when we read yet another study about an intervention not keeping people out of hospital.

Anne-Marie asked me to give a psychology/behavioural science geek take on self-management and why we seem to get it wrong. So here goes.

Self Management – aspiration and theory

Self-Management in chronic disease is a policy aspiration partly driven by experience of some people with some conditions (self-management in Diabetes) and by theory. So we have a policy chasing evidence. There’s nothing wrong in this, providing that the theory and concepts of self-management were rigorously designed consistent with best theory and evidence.  But a lot of research studies have suggested that where we are trying self-management, it’s not doing brilliantly well in practice.

But it remains good theory that people should be able to manage themselves, with help and support and skills, to remain as well and independent as possible, for as long as possible. And an ethical principle is that we have a duty to ourselves and to others to exercise some form of stewardship over our own lives, as long as we are able to.

A concept which heavily influenced me early in my career was that of the productive living strategy for people with chronic disease. Don’t talk about self-management if you can’t find a strategy and goals for people where they feel their lives are productive and valuable.  Jerry Johnson and Michael Pizzi wrote a book in 1990 on Productive Living Strategies for People with HIV/AIDS which was the right book at the right time, but now seems sadly out of print. This insight and concept is woefully underused still.

What’s wrong with the evidence, then?

Well, there’s nothing wrong with the evidence that shows self-management isn’t working well, except perhaps that most of these studies rely too heavily on one set of methods (quantitative OR qualitative) and so we don’t get a rounded and nuanced view of some of the issues. Human behaviour is complex, and as such it often needs to be researched in a way which understands that complexity. Qualitative AND quantitative methods are both needed.  Many studies point out there is a problem with implementing interventions consistently and well, and this in itself can confound any good study of whether the theory of self management actually works. Indeed, one of the insights of  Implementation Science is that implementation is every bit as important as evidence. Self-management is complex because human life is; so the reasons it fails are often equally as complex.

But there are many examples of patients who self-manage well. So what’s the issue we need to solve?

Needless complexity

Well, it might be that we are making things needlessly complex in two ways:

  • First, we over-complicate the theory and the interventions
  • Second, our complex health and social care system complicates things

Complex (many variables in an issue like self-management) doesn’t need to be complicated. That’s at least one area where we fall down.

A very recent paper in BMC Health Services Research is the latest in a line of research which suggests a number of issues with self-management. I am going to summarise these and several other papers. At least some of the reasons self-management fails to deliver are:

  1. We complicate needlessly
  2. The aspiration for self-management is good but it’s badly designed from the start
  3. providers and clinicians may not have time or skills to do it
  4. We don’t have good enough frameworks to understand what makes a person able to self-manage and what can enhance this
  5. The interventions we design to help people self-manage are sometimes overly difficult to access or put too many demands on peoples’ lives. For example, self management courses DAFNE and DESMOND for Diabetes have good evidence, but in their early forms taking a week to attend a class if you’re working is impossible for some people. And for some patients this is demotivating.  So we use a sledgehammer for a big blow when taking it more slowly might work just as well. Contrast this with the highly successful newly diagnosed with HIV courses running in a variety of places including Saturday Mornings. You can’t tell me HIV is less complex than Diabetes. This leads to another problem
  6. We sometimes stick to the evidence like glue “Only DAFNE works and you must attend it all week” when the obstacles to implementing this and difficulties for patients in achieving it actually demotivates and disengages patients. As professionals we need a more mature approach to evidence based praxis
  7. We often don’t use insights from behavioural science or health psychology in designing and implementing interventions
  8. Our clinical pathways, IT systems and financial incentives aren’t designed to make self-management work
  9. Patient-professional communications, as health psychology has shown, can often derail any well-intentioned attempt at self-management
  10. Peer support is often lacking or minimal
  11. Don’t reinforce the desire for self-management across all contacts with a patient
  12. A lot of research on self-management  and protocols for doing self-management are still using paradigms which are more biomedical than behavioural
  13. We don’t get blended learning well. I’m taking HIV again as an example because there is so much richness to learn from this field. Adults learn in a variety of ways. Combining easy to access support with information and tips and seeing it in practice works well. Check out how MyHIV has done it. It looks like it was designed using adult blended learning and empowerment theories. It clearly works for some people very well.

That’s enough to be going on with and if you’re like me you’re now being tempted to groan with despair.

So how do we understand the problem?

As a psychologist by training, one of my disciplines is when the evidence is not promising or silent, to go back to theory  and seek to test it by rigorous design of implementation frameworks and equally rigorous evaluation. In Health Psychology there is a tool called Implementation Mapping , developed by Bartholomew and Kok in the Netherlands, to help you do just this. Their book is still in print and extremely useful.

When an intervention isn’t working in the way the theory suggests it should, there are several possible solutions

  1. The theory of self-management is bad and should be ditched (I don’t think
  2. We’ve got the wrong concepts, frameworks and strategies (I think this is what the research is saying)
  3. We implement it really badly (I think this is also what the research is saying)

Let’s be honest, self-management is a complex intervention (by which I mean it has multiple components, not that it’s rocket science) which requires a framework, training, skill and expectations for everyone. Can we hand on heart say we have done this?  I doubt it.

So what, if anything, can we actually do?

Allow me to bang the drum for psychology here by saying NHS and Social Care Commissioners should have access to a well trained behavioural scientist who gets the real world and helps design interventions and their training which works and spends at least half their time on this. An investment of £70,000 a year in behavioural science could help.

But in a regime of austerity this might be a step too far if people feel behavioural science is unproven. So let me suggest  a process for getting self-management right

At Strategy and Commissioning Level

  1. Get a small action learning set of interested people together. Patients and Carers who self-manage well should be part of this and a behavioural scientist or psychologist
  2. Review the evidence and literature together using a workshop approach so everyone understands it
  3. Come up with a framework for self-management together
  4. Test it to destruction by throwing every possible problem and bad management event at it
  5. Make sure it becomes everybody’s business and that everyone has a role and has appropriate training to support self-management
  6. Redesign the system of going into and out of hospital so it supports self-management for those capable of doing it
  7. Design and run better, more real world, self-management courses for patients
  8. Integrate qualitative data from patient experience into design of systems. There are ways of testing and assessing qualitative data.

At Clinician Level

Let’s be honest here, only partnership with patients and carers will help us get self-management right. I learned valuable lessons about self-management from the way my mum and dad managed their disability and heart disease respectively which helped me understand the theory and evidence better. There’s nothing wrong with clinicians using and reflecting on patient experience to dialogue with the theory and evidence. We should encourage it. Reflective real world practice is often referred to in social sciences as praxis – (not the Marxist sense of the word) but practice informed by theory and evidence and reflection on that.

So supporting praxis which understands the insights from behavioural sciences about self-management is crucial. One of the best ways of doing that is build workshops where patients and behavioural scientists and clinicians can share and reflect.

At Patient Level

The first thing to do is not start building unnecessarily complicated interventions. If you have ever heard of the Di Clemente and Prochaska states of change model for health behaviour, now is the time to  park it somewhere nicely for the duration of this project. It won’t work in this situation and was arguably never intended to be a theory or model for behaviour change anyway. Yes, it works in some situations, but actually has major limitations.

Susan Michie has proposed a behaviour change model which is actually more simple, well grounded in theory and supported by evidence. And it is this:

  • For most health interventions, capability plus motivation plus opportunity leads to behaviour.
  • This needs skills, support and reinforcement

She talks of the Behaviour Change Wheel and you can find two free papers here:

If we follow Michie (and a host of others) then there are two big tasks for us :

  1. at patient level we need to assess, build and constantly reinforce the person’s capability, motivation and opportunity to self-manage. Capability includes the skills to do it and also the belief they can do it, as well as the readiness. In other words, interventions which support and train and reinforce and motivate are more likely to show effect if they are consistent across someone’s encounters with people and the person believes they can do it. Some folk will never manage it (they will always need it done for them), others can and do everyday.
  2. That brings me to the second, we need a behavioural science approach to understanding how we turn those who can’t into those who could.

Study after study suggests to us that self-management is difficult. That doesn’t mean it’s impossible. If we make it work, the benefits to patients (better quality of life), to NHS and Social Care (less cost) and to everyone (people with chronic disease able to live well with dignity) are clear. The problems are we use the wrong models, implement them badly and assume it’s either too easy or too difficult.

Who’s up for trying?

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6 thoughts on “Self management in chronic disease: yes, we can?

  1. Jim, excellent article and some fascinating models which may translate into a wider range of environmental health interventions as well as more “clinical” ones.

  2. Thank you for the insights into public health mindset. Paul Gilbert, Paquita de Zulueta and others at Human Values Forum for Health Care [http://www.humanvaluesforhewlthcare.com] argue that the problems we face in managing finite (and increasingly scarce) resources need to be viewed through a lens of ‘compassion’ in order to devise compassionate solutions. Unless this is done explicitly we may condemn whole segments of our society to dispassionate rationing decisions.

  3. Jim – this is exceedingly helpful, thank you.
    Clearly, we have tapped into an area of passion and expertise here, and it makes good sense to pursue this as well as “risk stratification” science – you got anything brilliant up your sleeve for that, I wonder?
    A “think tank” for all such excellent pontification and debate would be awesome – probably across CCG/HWB/HW … I’d love to be a part of it.

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