‘Expert Patient’, is this term really problematic?

I research Multiple Sclerosis (MS) and treatment decision making. I frequently use the phrase ‘patient expertise’ to refer to the MS patients’ knowledge about illness experience, preferences, values, social circumstances. However my eyes were opened to a different interpretation of this phrase when Margret McCartney, GP and blogger, recounted her annoyance at the term ‘expert patient’ in her blog post ‘Who’s the expert?’ http://www.margaretmccartney.com/blog/?p=1470  McCartney discussed the dangers of the connotations of the term ‘expert’: the implied conflict between patients and doctors and how the term is used to promote consumerism. Her blog got me thinking about my use of this term and whether it is appropriate. I follow McCartney on twitter, generally agree with her ideals, so without wishing to cause any conflict, I decided to reflect on my interpretation of ‘expert patient’ and contrast this with McCartney’s.

Meaning of ‘Expert’

The Encarta Dictionary definition of expert:

‘Somebody skilled or knowledgeable – somebody with a great deal of knowledge about, or skill, training, or experience in, a particular field or activity’

I am not a linguist, but I do find semantics fascinating, fluid and contentious. I think we all agree that words can connote or imply so much more than their dictionary definition. I don’t think there is necessarily a ‘correct’ interpretation and imagine there are frequently inconsistencies between individuals’ interpretations of the same word, but I think it is important to reflect and carefully consider the language we use. McCartney highlights connotations of the term ‘expert’ as being ‘better than others’ and ‘complete knowledge’. I agree with McCartney that the term ‘expert’ implies ‘better than others’, but I would also argue that may be appropriate in the case of GPs and patients. GPs’ training and practice experience means they are ‘better than others’ at providing primary healthcare to patients. Equally patients are often ‘better than others’ at knowing about their condition, especially those with chronic conditions; by experiencing it every day, learning their bodies’ reactions and being aware of treatment outcomes they value.

Being “somebody with a great deal of knowledge about, or skill, training, or experience in, a particular field or activity” or being ‘better than others’ denotes heightened levels of authority on knowledge in that particular context. However McCartney’s reading that the term ‘expert’ implies that ‘knowledge is complete’ and experts ‘know everything’ does not resonate with my understandings of ‘expert’. This interpretation appears to be slightly removed for me; my reading is that experts are reflective, keen to expand their knowledge further and be up to date with current thinking. But if a patient considers a doctor, or a doctor considers a patient, to be more expert and therefore cannot question their expertise, this is where the issue lies, not in the expertise itself, but the way it is dealt with during interaction.

Why use the term ‘expert patient’?

McCartney may not consider herself an ‘expert’, but the role she plays as a GP means that many do. Traditionally, patients and doctors have held unequal positions, with doctors being authoritative and patients being subordinate and following advice as prescribed. This is why sayings such as ‘trust me I’m a patient’ and ‘you tell me, you’re the patient’ have not caught on. Only in recent decades have these unequal positions been challenged and patient input been recognised as a valued contribution to consultations. But despite this, generally speaking, these unequal positions continue to persist.

Using language such as ‘expert patient’ is dynamic and repositions the patient, working to shake off previous connotations of subordination and help both patients and doctors recognise the value of patient input. My understanding of the term ‘expert patient’ is that it should not pit patients’ expertise against doctors’, but is used to actively heighten the value of patient input to a level which is closer to, or equal to, doctors’; resulting in conceptualisations of an overall increase of different types of expertise, rather than a belittling or causing reduction of doctors’ expertise.

Promotion of consumerism

One thing I whole-heartedly agree with McCartney is the danger that ‘patient expertise’ is used as a vehicle to promote ideals of consumerism. Without going into details, I believe making healthcare into a commodity is dangerous and results in a raw deal for the most vulnerable. McCartney referred to some sickening examples of patients who have had to be ‘let go’ from surgeries after the latest NHS reforms. Time and time again concepts related to patient involvement are used to justify arguments for commodification of healthcare. Angela Coulter recently reported her annoyance that policy makers have used the concept of shared decision making between patients and doctors to justify provider choice, causing confusion of the aims of shared decision making. http://www.kingsfund.org.uk/blog/decisionmaking.html  From a bioethical perspective, increased patient involvement in healthcare recognises the value of patient contribution and is a matter of enacting their autonomous rights. However this perspective can also be taken one step further to promote competition within healthcare services; the theory being that increased patient involvement and choice will drive up standards. This depicts situations where doctors are powerless, as patients make unrealistic demands from healthcare, causing conflict, inefficient use of healthcare services and tedious inappropriate tick boxes and targets. However, patient involvement does not need to mean consumerism and a more balanced approach can be adopted. Ideally they can aim for shared decision making; clear honest communication and work in partnership when deciding the best course of action.

Of course, some doctors do already encourage this style of interaction, McCartney herself a GP, refers to her own approach to consultation which is balanced and shaped by patient preferences for information and involvement:-

“I am on my patients’ side. […] This will mean that I do my best to get a helpful diagnosis, sometimes to avoid diagnosis, to share uncertainty, to discuss the limits of medicine or the dilemmas we face. […] it’s a relationship over time. So a decision might, on reflection, change; more information might be later gathered; further issues might appear to be explored or ignored. […] Not all patients have wanted to be involved centrally or peripherally with other people who have similar illnesses. Some people have wanted to be told by their doctors what they should do; some people want to examine each decision possible in minute detail. That’s all fine. It’s more than fine – I should be adaptable enough to maintain basic standards of informed consent while ensuring that people get the right amount of information.”

But many other GPs do not encourage this style, and further still, patients often do not expect to be involved. The approach which is taken by GPs makes a massive difference to patients, recently blogger Sue Marsh discusses the difference it makes to have a doctors who listens http://diaryofabenefitscrounger.blogspot.co.uk/2012/07/good-gp-can-it-possibly-be.html?spref=tw The aim of using terms such as ‘expert patient’ is to address this issue; when doctors do not listen, where the relationship is not equal and questions the status quo.

There are of course scenarios which are more conducive to recognising ‘patient expertise’, for example those with chronic conditions (such as MS) may have higher levels of expertise than patients with ingrowing toenails. But I have only ever heard the term ‘expert patient’ being used to refer to people with chronic conditions and the point is that if patients, even those with ingrowing toenails, have something to contribute, they feel confident and are encouraged to do so.

Different interpretations

I think McCartney and I have similar medical consultation ideals: GPs who value and listen to patients’ needs and respect their rights autonomous choice alongside patients who feel confident to contribute and be involved, within the limitations and practicalities of healthcare systems. However, our interpretations of the term ‘expert patient’ differs, McCartney warns that the term ‘expert patient’ may be used to devalue doctor input, promote inefficient and impractical demands and commodification of healthcare systems. Whereas I see it as a tool used to recognise the importance of patient input and the value of their knowledge. Both interpretations are valid and demonstrate how interpretations and understandings differ.

In summary, the aim of this post is to reflect on the language used and the hidden connotations and meanings. When reading literature and policy which promotes patient ‘expertise’ and involvement it is important to be critical, assess authors’ aims and consider how this would play out in reality. For me, McCartney’s post has highlighted different understandings, encouraged me to reflect on my use of terminology and how this may be construed by others.

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4 Comments

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4 responses to “‘Expert Patient’, is this term really problematic?

  1. Peter Thomas

    Abi,

    Very enlightening comments and some thoughtful insight by yourself and McCartney.
    Some elements i disagree with. But, from my perspective, being a patient and in my experience a cancer patient with extensive and long tratments, i would categorically say that when it comes to ‘me’ and my understanding of whats being done to me and how i feel – i am without doubt an expert! I would also add, that i would argue strongly on that.
    On the other hand, when it came to my treatments and hospital stays i wanted as much information as i could – some patients dont, it was my way of dealing with it.
    I work extensively with many Cancer charities and Gov in helping formulate policies etc. and one thing that is clearly missing is more patient involvement, theres simply not enough.

    NHS policies are very fragmented, designed and driven by senior people who think they know what the patient wants, but dont. When it comes down to the person lying in the bed, all of the ‘hot air’ being spoke by emenent people doesnt reflect in actual simple care on the ground. Is it a trickle effect? Dont really know, probably? Thats all i know is that what they say doesnt reflect in what the patient gets

    Good luck in your quest!

    Peter Thomas
    Cancer Survivor
    Carmarthenshire

  2. mgt mccartney

    thanks so much for such a thoughtful reply – I agree with much of what you say.
    Can I offer another issue; if some patients are ‘experts’, then that may infer that there are others who are not. What does this mean – are some are deemed not expert enough? – when of course patients as individuals are the only ones who can say how their illness affects them and what choices they want to make (especially when it’s not that obvious and all come with a balance of risks and harms.) Will the fact that these people don’t see themselves as, or patients who are not ‘experts’ mean that doctors don’t expect them to want to make informed choices? I hope not, but I am not sure.
    The other issue is what it would be really useful for patients who wanted to be ‘expert’ to know about. I would absolutely love if there was, for example, useful information about how to dissect health claims, the latest research, basic statistics, available as a package for patients who wanted to get new knowledge or develop these kinds of skills as an individual or peer supporter. Some health charities are v good at this, others, less so. What do you think?

  3. I agree. I think some of the health claims made are ‘criminal’ and there should be more regulation in place in how this information is presented, education in how to decipher claims and understand how interests of the author/researcher may be skewing these.

    In response to some patients being perceived as less expert than others, I don’t really have an answer to that, but these are my thoughts: Assumptions & judgments are always made during interactions, but I believe the important thing is to be aware of and question these. I think some patients are considered (and, dare I say it, probably are) more expert than others. But the suggestion that one patient is expert, should not necessarily mean that other patients are considered less expert than they were previously. Hopefully the dynamic language such as ‘expert patient’ will work to recognise the potential for all patient’s to be experts.

    I don’t know, maybe if one patient is considered an expert, then other patients’ involvement is devalued, but I don’t really see the logic behind that, as they’re separate interactions. But I do agree that all patients should feel confident and encouraged to voice their opinions and have these recognised as valid, regardless of the presentation and their expertise.

  4. Hey there, Just came across your very interesting post, it resonated with me greatly. I very much agree with your concept of ‘patient expertise’, and find it heartening that you refer to the ‘expertise’ of the MS patients you speak to. I don’t have MS but was diagnosed with myalgic encephalomyelitis (ME) by a consultant neurologist in early 1984 when I was an undergraduate in Glasgow. I had contracted Coxsackie B4 virus at end of 1982, others in west of Scotland also developed ME as a result of Coxsackie outbreak at this time. It often stuns me that 30 years on, my illness has been conflated with the nebulous ‘chronic fatigue syndrome’ (CFS) – with the result, most doctors do not know what classic neurological ME is and must rely on patients to educate them (ME has been categorised by WHO as a neurological illness since 1969). I am lucky that I got my diagnosis pre-CFS label and that I have, for the most part, had great GPs who *are* willing to learn from my experience of the illness. Illness is a two-way street, doctors and patients must be willing to respect and embrace each other’s ‘expertise’. Sadly, too many people with ME do not have their expertise acknowledged.

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