Patient Activation – is this what we need?

The Kings Fund has released an interesting and, in relation to our last blog post, extremely topical, report, called ‘supporting people to manage their health’. You can probably see immediately why it caught our eye and attention here at SD.

The report is all about a measuring tool, a questionnaire called the Patient Activation Measure (PAM). People are asked to state in percentage terms, the extent to which they agree with a number of statements in relation to taking charge of their health and healthcare. The higher their score, the more ‘activated’ they are, for example to undertake healthy behaviours, seek help more promptly and stay out of hospital. The reverse is true, with low scorers tending to be more passive or ignoring of their health, resulting in more emergency visits, appointments or not taking prescribed medication. The implications of these different activation levels may make a profound difference to health outcomes.

The PAM has been around for a while, and it has been used successfully to show relationships between activation scores and health related behaviour in a variety of different populations and conditions. It’s a very useful measure, especially in the current health climate of encouraging more participation in healthcare and the need for active self management of long term conditions, such as diabetes. These conditions require relentless decision-making and action on the part of the person with it, day in and day out, 365 days a year. Knowing who is more likely to take this action and who needs more support to be successful is surely a good thing, and where this measure can deliver, right?

Well, that all depends on if the information from the measure is actually acted upon, and what approaches are used to intervene. So often, knowing something because it’s been measured and acting on it are two very different things and of course it’s much, much more difficult to take the required action than to measure it. For example, it’s one thing knowing that a group of people are at risk of diabetes (because their blood glucose has been measured) than it is to put in place the changes needed and the intensive support for those people to make the changes and sustain them to prevent their developing diabetes.

Arguably, we know more now about ‘the state of the art’ of diabetes care and education than ever in history, but despite these figures, there are still tens of thousands of people with the condition who are not receiving basic care and even more not receiving any formal learning programme, such as a structured education programme. This is despite care and education programmes being tried, tested and available.

One of the mechanisms for measuring outcomes in the NHS is the Quality and Outcomes Framework (QOF), which, briefly, gives points to health providers for taking certain actions. The points translate to payment. The QOF has recently had an overhaul for the year starting in April 2014 and now includes points for referring people to education programmes. Note, for referral, not attendance. The former can perhaps be measured much more easily, even though it is only the attendance at programmes that will deliver the positive outcomes to the people attending. To us at SD, this seems a triumph of measurement over gaining benefit and as far as we are aware, there are no plans to change the QOF to measure attendance, although we sincerely hope that will come to pass.

So, we have to be careful about reports such as about the PAM which extol the virtues of measurement, and be sure to ask much more searching questions about how the resulting data will be used.

To be fair, the report does mention the kind of interventions that will help people to become more activated. Unsurprisingly, these are all well-known and frequently mentioned here, and in other places: building confidence; coaching; encouraging learning and mastery of their condition; peer support and attention to emotional care and stress reduction. These are not widely commissioned in the present NHS. In diabetes care, they are often the very components of the education courses, mentioned earlier, which people are not receiving, which seems to be an ironic twist.

On a linguistic note, which you may know we consider very important, it is a shame that the measure and such a well-titled report which is about all our lives and strives as humans, still refer to ‘patients’. This persists the apparantly patronising delusion in healthcare circles that there is some divide between ‘patients’ and ‘others’. Unless there is to be a sibling measure entitled ‘a health professional activation measure’ or ‘a non-patient activation measure’, perhaps a more accurate title might be the more neutral and accurate ‘health activation measure’?

Having said all that, it’s always welcome to have a publication which cites evidence and good practice to add to the many ‘arms’ who push for change and implementation of effective practices that people benefit from so successfully. In that respect it is a valuable addition to the literature and SD is already ‘activated’ to help spread its words very widely.


Supporting people to manage their health: an introduction to patient activation. London. The Kings Fund. May 2014.

Mind Your Language – Oz Style! Successful Diabetes Blog December 2011

'Doing Diabetes' - A Very Human Mission

One of the most interesting and lively discussions that often arise during personalised care planning workshops is about behaviour change and motivation. Health professionals often raise concerns about people with diabetes not meeting recommendations for their blood glucose or HbA1c levels, weight, exercise or taking medications as prescribed. They recognise it is hard for people to do these things but also express frustration that their efforts to advise and encourage seem to fall on deaf ears. As one health professional recently put it ‘they don’t seem to realise how important it is to look after themselves. I feel like I’m wasting my time’

Indeed they might be wasting their time and also that of the person with diabetes. For although the intention is excellent and the desire to help is paramount, there is a flaw in this way of thinking about helping people change. That is the underlying assumption that ‘they’ need to do something different because they have diabetes.

The reality is that, as we have mentioned before, having diabetes – or any other long term condition for that matter – does not make you automatically more motivated or successful in your efforts to make healthy changes than anyone else, or, crucially, to heed advice however well meant, from health professionals. Nor would health professionals be more successful at it, if they developed diabetes themselves tomorrow.

During such a discussion, I might ask health professionals how well they manage to adhere to ‘everyday’ health recommendations around taking exercise (150minutes/week), drinking alcohol (maximum 20 or 14 units/week for men and women respectively), calorie intake (3000/2000 a day for men and women) and eating oily fish (1 or more portions/week) Often, this produces a ripple of rueful laughter, as people realise that they don’t necessarily practice what they preach and this is nothing to do with having diabetes.

Further discussion reveals that the reasons they give for not being able to meet these recommendations – typically time for exercise, having a busy lifestyle, eating what’s available, family pressures around food preferences and not making themselves and their health a priority – are much the same as those with diabetes would give, with many more diabetes related activities to perform, for example blood testing, insulin dose adjustment, hypo prevention and foot checks, not to mention clinic appointments.

So what we establish is that motivation and behaviour change are influenced because of humanity, not the condition you live with. The key drivers are not what someone else advises you to do or recommends, but how important you think an action is, how many barriers to it are in your way, whether you believe your actions will result in benefits, whether you have confidence in your ability to take whatever action it is and also what past experience of success or failure you have had – to name but a few.

The consultation that simply gives information and advice is not going to be very helpful and might well be the waste of time and cauldron of frustration mentioned by that health professional earlier. Much more useful is one that explores the human side of behaviour – what makes you do something? What stops you? How important do you think it is to deal with your diabetes? How confident do you feel about doing what is recommended? These are all questions that could use the time much more effectively and even ones that someone could reflect on in advance.

Such an approach is truly a human collaboration and makes life much less frustrating for everyone ‘doing diabetes’ in their life or work. Thankfully it is an approach firmly ingrained in the new health policy rhetoric. The challenge now is to make it a reality.


Reference
Personalised Care Planning Workshops by Successful Diabetes