It may not be actually necessary to abolish the term ‘patient activation measure’. It is such an unappealing term anyway, it is hard to feel that patients themselves, despite free tickets as campaigners and leaders to industry-sponsored conferences, wish to be perceived as ‘activated’ like washing machines.
The idea that patients are not passive recipients of medical advice is a crucial one, but that is not the issue.
When I was asked what I would replace the term ‘patient activation measure’ with, I was of course obligated to look up the accepted definition of “patient activation”. This is helpfully supplied by NHS England.
“Patient activation describes the knowledge, skills and confidence a person has in managing their own health and care.”
It’s perhaps worth remembering at this juncture that reports from leading think-tanks can be, potentially, more like marketing than research. The conflicts of interests in corporate-sponsored products, including in academia and think-tanks, are sometimes not scrutinised adequately. And sometimes the aim of the term is more to do with the appeal of the “brand” in marketing (using concepts such as “brand equity“), rather than a coherent analysis of relevant aspects of the underlying field. The name, although being pithy, has to be commercially attractive, such as “electronic frailty index” or “dementia friendly commnunities”. As such, neither suppliers and purchasers want a semantic discussion of what ‘frailty’ is or what ‘friendly’ means, as long as the supplier can create competitive advantage, and use marketing to create a near monopoly in its use. This potential abuse of power is of course facilitated with capture in well-respected “independent” “think tanks”, or charities. Then someone like NHS England or Public Health England, large QUANGOs or actual government, can enforce the ‘brand leader’, the healthcare equivalent of a Big Mac or Whopper. A debate about the “capture” of public health has been started, but really does need to be continued (see for example an excellent BMJ article), promoted manipulatively through terms such as “pre-dementia”, “pre-frailty” and “pre-diabetes” for example. Rather than encouraging diversity, the market is in fact highly skewed in certain directions, and this ultimately, I feel, is to the detriment of the actual end-user (who, wearing different hats on, might be a “service user”, “consumer” or “patient”).
I suppose that it is ‘human nature’ to want a ‘quick fix’, but the potential problem with all of these approaches is that they are not “person-centred” at all (a much misused and bastardised term, which has its origins in sophisticated philosophy about personhood), but are highly individualistic and victim-blaming. It’s not about wanting to know about people’s life plans – it’s about selling the product to commissioners that activated patients will cost you less once activated. It is not a short distance from a failure of ‘patient activation’ to an ‘avoidable admission’, and thenceforth to being a ‘bed blocker’. This is individualistic victim-blaming. It would be wholly unfair for patients who are genuinely at rock bottom in terms of mood or motivation, or cognitive abilities, through absolutely no fault of their own. Whilst these measures are said to be ‘robustly validated’, there for me is something intrinsically unappealing about homogenising the marked heterogeneity in cognitive and behavioural performance (such as attention, memory or perception) in people living, say, with mood disorders, dementia or schizophrenia. You cannot half believe in ‘parity of esteem’, so equity on patient activation is relevant for problems with physical, social or mental health – despite being addressed with the marketing banner that patient activation can ‘reduce social inequalities’ (a claim which is in legal terms is essentially “mere puff”).
The field of ‘patient activation’ is essentially remarkably reminiscent of ‘consumer behaviour‘, and has very little to do with genuinely person-centred approaches (see for example the work of Prof Brendan McCormack or Prof Jan Dewing).
As Wikipedia says,
“Consumer behaviour entails “all activities associated with the purchase, use and disposal of goods and services, including the consumer’s emotional, mental and behavioural responses that precede or follow these activities.” [9] The term, consumer can refer to individual consumers or organisational consumers. Consumer behaviour is concerned with:[10]“
A diagnosis and management has to be at the right time for a patient. This simply is not captured in an entirely reductionist way by a number such as a ‘patient activation measure’. If I wanted a genuine behavioural and cultural change, to empowering patients with less paternalism, I would not trademark or license a manoeuvre (meaning people could not merely copy the name). This is all remarkably reminiscent of the trademarking of ‘dementia friends’. Creating a competitive advantage through a unique selling point is an entirely different approach. And, as with dementia friends, patient activation is infested (yes, strong word) with champions, leaders, ambassadors and award ceremonies. But this is not real cultural change. It imposes a definition of what is ‘normal’ or acceptable, completely at odds at recognising a patient’s own unique circumstances perhaps reflected in the wider determinants of health, such as housing or poverty. A number does not properly encapsulate complexity, which might include complexity in a patient’s beliefs, concerns and expectations. But it is entirely consistent with “a selling snake-oil approach”, where memes such as ‘stratifying the population’, ‘ascertaining risk’, and ‘cutting costs’ have become widespread mantra. Again, the similarities with marketing are terrifying – compare “population segmentation” say in people who are poor at self-activation with “market segmentation” a distinct population subgroup to whom you could direct marketing for products and services towards. Essentially it is about creating new markets and new industry, or profit and surpluses, and it should be called out really for what it is. The term itself is clunky, offensive, and itself does not promote diffusion or adoption of innovations.
It is also striking that for a term so blatantly borrowed from industry and non-clinical approaches that it offends one of the major principles in management. That is, you should manage according to your resources. One of the major criticisms of ‘payment by results’, based on Cooper and Kaplan’s ‘activity based costing’ in management accounting, was that the collection of data to make decisions would itself be counterproductive due to being resource intensive. At a time when we are reliably told that the clinical workforce is overworked and underresourced one has to wonder about the wisdom of siphoning off resources into proprietary devices (for measuring patient activation or how well your friends and family feel their ‘experience’ went). We are told that resources are scarce, and yet somehow money is always found for pet projects where the evidence arguably can be rather flimsy. And a whole new industry is born – take NHS England’s “advice”:
“NHS England’s Realising the Value programme has also identified five evidence-based approaches that engage people in their own health and care. The five areas of practice are self-management education; peer support; health coaching; group activities that promote health and well-being; and asset-based approaches in a health and well-being context.”
I don’t at all disagree with the idea of patients informed about their own conditions making wise choices about improving their health and wellbeing. The term is awful and pejorative, and should be scrapped. It implies that there exists a large group of patients who deliberately want to remain de-activated, rather than the fact that the system as a whole, such as underfunding of the NHS and social care, has ‘deactivated’ them. I wonder how many clinicians in their millions of interactions daily are thinking, ‘I wonder how activated she was today?’. If you’re a member of the Royal College of GPs, you could be asking “Was Enid sufficiently activated today?”
Above all, I am surprised at the lack of sensible discussion about this. We can all do better than this?