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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Helping community agencies be effective in community safety and public health

 

To support agencies wanting to bid for the  fund for communities created by Hertfordshire’s Police and Crime Commissioner I found and shared a set of resources and tools which people might find useful.  I shared these on twitter and lots of people came back and asked for more resources.

So  here, in one place, are a range of tools and resources for you to use and share.

A good place to start is reading the Hertfordshire Police and Crime Plan.

 

Evidence for what might work in crime reduction and community safety

There is a lot of opinion about what works and what doesn’t in crime reduction. I am going to point you to the resources which I and colleagues have found to be most rigorous

  • The Campbell Collaboration has a host of systematic reviews on crime and social issues
  • A Knowledge hub of a range of things which work is here
  • Thinking of doing something on fear of crime, try here or here
  • Reducing youth crime and anti-social behaviour: a useful resource is here
  • If you want to train up community practitioners, you might find some training models here for crime reduction and here  and remember Neighbourhood Watch do a programme of training for community advocates
  • Publications by Jim McManus on crime reduction and community safety including hate crime and designing out crime are here

 

Networking and support for agencies working to reduce crime

  • CLINKS helps voluntary and community agencies who work in reducing crime and re-offending

 

Understanding Health Inequalities, guides for community agencies

  • The Royal College of Nursing has a really useful webpage and guide

 

How on earth do I evaluate and monitor whether this works?

Evaluating (i.e. finding what the impact of your intervention was and whether it’s worth it) is very important because we need to know whether projects work, do nothing, or do harm. Community agencies so often find evaluation a world where experts talk jargon at each other. Here are my top resources for communities wanting to evaluate:

  • A very simple, straightforward and easy menu of tools for evaluation and monitoring aimed at not for profit and community agencies is here.
  • If you need to get your head round what evaluation is and why you need to do it, Evaluation Support Scotland has some excellent resources
  • The Kellogg Foundation Handbook is free and one of the best whole system approaches to evaluation you can find. This provides a tried and tested model used in major and minor projects in developing countries. I have used it and it works.
  • If that’s too ambitious you can try Charities Evaluation Services who have a range of tools on evaluation
  • Prove and Improve is an online toolkit to help you demonstrate projects work and improve their quality and impact

 

What about attempting a cost-benefit analysis?

The Office of Public Management has a really useful tool, Valuing Public Services on how to measure the value of services and interventions

 

And finally…

Can you explain something in plain English rather than Jargon?  (Ok, yes I fail often at this.) Try this tool http://www.splasho.com/upgoer5/

 

If there is stuff you want but isn’t here, tweet me @jimmcmanusph or email publichealth @ herfordshire.gov.uk  with “Ask Jim” in the title

What can a Public Health mindset bring to making communities safer?

Hertfordshire’s Police and Crime Commissioner has done something visionary.  He has set up a fund for communities to put together “innovative local schemes which aim to make our communities safer”. This fund is linked to the Police and Crime Plan for Hertfordshire, which takes an “everybody’s business” approach to reducing crime and making communities safer.

Less than an hour later I had tweets and emails asking me what evidence communities could use. Then people started asking me how they could develop and put evaluation frameworks around bids. Then partners asked – can we use the Herts Public Health Partnership Fund given to LSPs and Districts to match fund where there are clear links and overlaps? (The overwhelming view of the Public Health Board was yes.)

This set me thinking, what does Public Health have to bring to the table?  More years ago than I care to remember, I produced briefings on crime and community safety among other work I did in community safety and crime reduction. My public health training helped me find the evidence and organise it into tools which went to statutory crime and disorder reduction partnerships.

I often say one of the ways I describe Public Health  about four Ps:

  • A Perspective (or Mindset) which focuses on
  • Populations and sub-populations; which is
  • Prospective (it looks to what can be improved, prevented or avoided) and goes retrospective to understand where we are today
  • Protective – seeking to protect communities and individuals from risk to health and life

The mindset of Community Safety is very similar. Both Public Health and Community Safety work in similar ways: through communities, through skilling people up, commissioning and using interventions which have evidence of effectiveness and sometimes, when the evidence is silent, going back to good theory to build an intervention and evaluate whether it works.

The Evidence

Crime impacts on Health in a range of ways, and there is a great deal of literature on this. Things like acquisitive crime to feed drug habits, and the devastation of domestic violence and hate crime are perhaps the ones that spring readily to mind. But there are other issues too:

  1. Evidence suggests that ongoing stress from high levels of crime and high fear of crime contributes to a stress pathway that can lead to mental ill-health, poor resilience and even heart disease and stroke.
  2. Victims of crime are more prone to physical and psychological ill-health on an ongoing basis.
  3. Disabled people are typically more victimised for property crime than the general population
  4. Hate Crimes have enduring mental health consequences
  5. Victims of violence often develop adverse coping mechanisms which develop health problems
  6. Ongoing phantom pain and unexplained symptoms among people who are victims are not uncommon

By contrast, communities which have strong self-efficacy (i.e. they believe they can do what they need to) are more resilient (i.e. they can handle challenges and problems more easily and return to a good state of functioning more readily), healthier and more able to address issues of relevance to their communities like crime and disorder. They also have lower fear of crime.

Building resilient communities

So how do we build resilient communities? In essence where people share the same place and public realm we need to support communities find strengths, self-confidence, skills and solutions at individual and interpersonal level, have strong links with each other and develop a sense of affinity for those they live next to and nearby.   Where people share the same identity (sexuality, faith, nationality) finding common ground and sharing common interests are salient. This is neither new nor rocket science.

But often we lack the insight of the behavioural sciences. And it can be quite simple to harness these. We talk about community development in the UK. In the US they talk about Community Advocacy. Community Advocacy has at its hear building capacity in communities to help themselves, to do, to believe in themselves. The approach works in Community Safety as well as Health.  It is particularly effective for marginalised communities and those experiencing hate crimes and has a strong track record in the US. The role of a range of diversity groups  such as Faith Communities in Health Advocacy in the US is particularly striking, working as they do for very marginalised communities. We have much to learn from them.

Building resilient communities is something which public health and community safety could do together, because everyone benefits. Addressing specific types of crime (hate crime, domestic violence) also brings ongoing benefits to both agendas.

The Public Health Contribution

Taking just the range of issues above, Public Health has a lot to bring to the table. The prestigious John Jay College of Criminal Justice actually has a whole programme of courses on health and crime.  I am going to list just some of the things public health can bring to the table:

  1. Sharing epidemiological skills so we can understand better the distribution of crime in time and place
  2. Working together on public resilience and mental health agendas
  3. Finding and appraising evidence for effective interventions (see my next blog post)
  4. Helping NHS commissioners and providers respond early and effectively to victims of crime
  5. Training Police and others in preventing victims of hate crime becoming more traumatised
  6. Providing drug and alcohol services and pathways which cut crime and disorder and help people with problems
  7. Providing training to communities who want to implement and evaluate programmes
  8. Sharing evaluation, evidence appraisal and policy appraisal skills with people in crime reduction
  9. Ensuring services for those likely to become victims of hate crime encourage and support people to report
  10. Ensure the cycle of crime in troubled families is broken by finding effective interventions for people to thrive
  11. Find interventions which help children thrive emotionally and value themselves and others
  12. Using the public health role in licensing to the best good of communities

The new landscape of the NHS means NHS Clinical Commissioning Groups are responsible authorities for Community Safety Partnerships. This could be seen as yet another burden on new CCGs. The challenge is to find ways of integrating the CCG agendas with the community safety agenda, and picking some concrete issues and projects to start with.

My next blog post will do two things: signpost agencies to sources of good evidence in crime reduction, and signpost them to resources to help them evaluate interve