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