We’ve all heard of the dreaded nocebo, but when does the nocebo become willing use of language designed to hurt and mame for personal or company profit?
When does the average clinician become a predator? How much do you really know about your patient’s health literacy?
I witness a big push to stop unhelpful, damaging health messages amongst the top clinicians in my immediate circle. This is great and it would have me believe that predation in our healthcare system is slowly on the decline, but then again, I’m probably following and am friends with a skewed population group. Stories I hear from my team and the every day media forces me to remember that there is still widespread fear mongering and use of nocebic language. I contend that this kind of practice should be termed predatory behaviour and we still have an uphill battle to undo the widespread predation that is delivered by the system at large.
Health literacy; everybody’s duty
The World Health Organisation (WHO) defines health literacy as. “the cognitive and social skills, which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health” (Ref). This is fairly ethereal in terms of clinical practice; another definition from the US DoHHS, Healthy People 2010 report is “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”
So, you wouldn’t ask someone to squat their body weight if they didn’t have the capacity to get up from a chair. You would first assess their capacity in a task-specific format and tailor your intervention from there. I contend there is no difference between this and providing education and advice, an awareness of the individual’s capacity to take on-board, process and make a decision based on this information is critical.
Literacy rates in developing nations has a very strong correlation with birth rates and infant mortality and when women are more educated, they make more informed choices leading to population stabilisation and better infant health; do we need to start considering health literacy in the same fashion, a public health imperative in order to reduce our societal pain burden? Is it plausible that more informed choices about health, and specifically for readers of this blog, musculoskeletal pain conditions, would lead to better outcomes? Rhetorical question – I think we can all agree this kind of hypothesis is pretty sound.
Does the tidal wave of pain burden have a simple root cause in poor education? And by focusing on this on a wide-scale, can we change the course of one of today’s most pressing emerging health conditions?
Although good clinicians do generally present their information on an ad-hoc analysis of health literacy levels for each patient – it’s part of the most important job to do, to ensure your advice is taken on-board in the correct way – this is definitely not the case in interactions that can’t involve the same in-depth analysis. The all too common 5-minute GP consultation, the Dr Google search, the infomercial on daytime TV; examples of a health message that is at odds with the level of understanding and decision making capability are too many to count. I’m sure we can all think of these.
I’m sure I’m not alone in being exasperated by patients that attend with narratives that you think,
‘Where on earth did they pick that s&$! up!?’
Chances are, poor language – or health message from various source/s – plus poor health literacy combined, in a perfect storm to create the most almighty misinformation. Generally, nothing sinister, just mis-matched information for the level of capacity to understand in the first place. Although, we may sometimes see the intentional use of misinformation (I’m getting to that..) I don’t think actually happens in the majority of interactions.
Gauging the problem; assessing capacity
The problem is, that health literacy is a broad and complex issue – moreso than just literacy – as it includes the not just ability to read, write and comprehend but a social construct of active engagement of discussion with healthcare professionals. There is plenty of information on it online.
Various facets to health literacy include, but are not limited to:
1. The functional level of health literacy: The basic skills of writing, reading and numeracy that allow an individual to function effectively with regards to their health.
2. The interactive level of health literacy: A more advanced level of literacy, cognitive and social skills that make an individual capable of retrieving health information and active engage in dialogue/discussion with healthcare professionals.
3. The critical level of health literacy: An advanced set of skills that includes critical analysis of health information retrieved independently or from the healthcare system and the ability to actively act on this information.
There have been numerous attempts at providing a quantification for this concept.
1. The Rapid Estimate of Adult Learning in Medicine (REALM) is a chunky 66-item questionnaire, but a shorter 7-item version has recently been developed and validated (REALM-SF). This is most extensively used and validated in the US.
2. The Test of Functional Health Literacy in Adults (TOFHLA) has been validated across a range of populations including COPD.
3. Health Literacy Questionnaire is one attempt to comprehensively capture the concept, consisting of 9 domains. Produced in Australia by the Ophelia group, it is more relevant to the intrinsic dynamics of the clinical interaction. It can be dissected and tailored to your working population, I highly recommend having a look at this.
4. To make somewhat of a point as to the importance of health literacy, a very very large company has made it their business to gauge this issue. Pfizer, yes the very same company that essentially has a large stake in keeping people unhealthy, has produced the very quick and easy Newest Vital Sign. An ice-cream container label, consisting of 6 questions and takes 3 minutes to do….. I don’t even know where to start with the irony in this one, but you get the point, health literacy is obviously important.
The take home
I now work exclusively in the oh-so-worrisome Worker’s Compensation system. In this system, moreso than others in my opinion, a lack of health literacy is a contributing factor to poor outcomes. Yellow flags are compounded by a poor understanding of every piece of critical information that is provided. Where poor, and yes all too frequently nocebic, information is provided there is no proper processing and analysis of this information. In this way, nocebic effects are taken on board and transferred into a narrative that the patient will identify with. Unfortunately in the Worker’s Compensation system, this process of poor understanding of information, lack of filtering of ‘bad’ information and absence of any analytical thought is compounded by the patient being in a particularly vulnerable position. As the ‘pawn’ in a grand dance of powerful stakeholders – employer, insurance company and unscrupulous clinicians – they end up in a spiral into chronic pain, largely out of their control. A lot of this is due to the lack of basic skills in health literacy – the inability to make informed choices.
My take home is simple: before providing advice and education a crucial step is to assess capacity. Just as you would with any other intervention, get a baseline and progress accordingly. Otherwise you are as bad as ‘those clinicians‘; it’s everyone’s responsibility to upskill and educate every patient, improving public health literacy is a cause that we all have a stake in. The tool may not be the important point, but understanding that it is a broad and complex paradigm is.
Although the clinician may perform an assessment of the patient’s health literacy somewhat informally and ensure messages are tailored accordingly, I’m sure we can all think of clinicians that take an alternate approach.
That is why I propose using the term ‘predatory’ in the instances we see every day from various clinicians and platforms that we know are peddling harmful ‘fear-inducing’, nocebic messages.
The power imbalance in clinical practice is real and a very important concept to garner a full appreciation of. Physiotherapists are in a very uneven position and if you think it’s not as uneven as other professionals, then you’re wrong, it is every bit – if not more – as uneven. Patients are inherently vulnerable, and again, in my line of work they are made more vulnerable by being in pain and going through a compensable environment. This is where we see the Worker’s Compensation system fail again, through ensuring very vulnerable people are subject to potentially predatory behaviour.
Predatory behaviour is exhibited by parties, who are obviously more powerful than the average consumer – very large corporations in mass media is a good example of this. Dr Google, through the vey brief interactions that he/she has with A LOT of unsuspecting members of public, may be benefitting from pedalling adverts and ‘click-bait’ based on misinformation. Big Pharma benefit from a misinformed mass public, pedalling their products to people who just don’t know any better, like this advert for Lyrica in Fibromyalgia. An advert that spends more time listing the side-effects than actually explaining the effects can not be helpful, or understood well, surely?
Those in power who provide information without first assessing the capacity of the audience to understand and process the information should, in my opinion, be held responsible for more than they currently are.
Should we be more aware of predatory behaviour and be calling it out as such? As health professionals, isn’t this our first priority; a duty of care to our patients to ensure no harm can come to them?