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

To attend clinic or not to attend it - but is that really the question?

A short article, published in the latest issue of Diabetic Medicine (the professional journal of Diabetes UK), describes research into whether young adults in the UK choose to attend their clinic appointments or not. The authors looked at records of attendance and also interviewed 17 young people about what influenced whether they attended or not. 

The results showed that, rather than might be expected, having ‘poor control’ (defined as having a high HbA1c level), made it less likely that people would attend, because of the fear of being judged by health professionals. Another major reason for not going to clinic was literally not being able to get there because of work or study commitments, including the attitudes of employers to taking time off for health-related appointments. The authors conclude that health professionals need to be more supportive and non judgemental, and also that reminders about appointments and flexible clinic hours are factors which will encourage people to attend more.

That sounds fairly straightforward, doesn’t it? Or does it? Sending a text or email reminder is a good idea and a very simple task, but does simply knowing about an appointment mean that people will attend it? The decision-making sounds much more complex than that, given the information about potentially feeling judged. In our experience, this complexity is not confined to young adults and whether to attend is often based on what the answers might be to questions such as these:

‘I already know my glucose levels have been high recently - will I hear bad news?’

‘Do I trust them enough to tell them how bad things are at home at the moment?’

‘Can I deal with MORE criticism right now?’

And even when things are going well, the questions or thoughts might include:

‘Is it a good use of my day off, to wait for ages, just to be told to come back in 6 months and keep up the good work?’

‘It’s a welcome break not to have to think about it all at the moment while things are going well’

On the other hand, health professionals pride themselves on being available to help people who are struggling and of course, know very well the potential negative outcomes of not attending clinic appointments or having longstanding raised glucose levels. Some health professionals, such as GPs, are actually paid higher amounts of money if people in their care have better diabetes  (measured by HbA1c). They often genuinely worry about people who don’t attend and also become frustrated about empty appointments that could have been used for other people, and other upsets to the ‘system’. It’s no surprise in a way that a judgemental attitude can creep in, although most health professionals would be horrified to think they were being seen in that light.

So the real question is, How can we achieve success with lifelong attendance at clinic visits without damaging the delicate mix of emotions, self esteem and ‘having a life’ for both people with diabetes AND health professionals? Here are a few ideas of what could happen, which both people with diabetes and health professionals could influence:

·      Start as you mean to go on, with a view that a consultation is a partnership, not a dictatorship. You are working together on the ‘diabetes project’ that is everyday life with diabetes for the person with it

·      Build in a bit of preparation for the consultation, for example, the person with diabetes requesting or being offered the chance to see their test results before they attend, so that they can decide what aspects they want to discuss. Also, considering their own priorities and questions for the visit

·      Starting every consultation with a discussion of how the person with diabetes is feeling and thinking and what questions they have, rather than with what the health professionals think. This way of doing things is known to increase satisfaction and attendance rates

·      Thinking of the person with diabetes as a person rather than a patient, and a health professional as a supporter (and also a person!) rather than an authority figure. Terminology, as we explored in an earlier blog, can make a huge difference to attitude and relationships

·      Finally, recognise that there is always a reason for the way people behave. Having some curiosity and care, and being brave enough to explore what is keeping people away from clinics, or why the relationship between health professional and person with diabetes doesn’t seem to be working, could make a vast difference to the future.

What do you think of these ideas – and how does all this fit with your experiences of either providing or receiving care in a diabetes clinic system?

Reference

Snow, R., Fulop, N. (2012). Understanding issues associated with attending a young adult diabetes clinic: a case study. Diabetic Medicine, 29,2, 257-259