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.
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.
Recently, hoarding has gained increasing interest in medical and research circles. It is now classified as a disorder and is due to be included in the next publication of the APA’s ‘Diagnostic and Statistical Manual of Mental Disorders’ in May 2013. This increasing interest may have been what’s inspired Channel 4’s new series ‘The Hoarder Next Door’. Whilst watching the show’s featured hoarder Helen ease herself into tacking her hoard by first picking up paper only, I was reminded of my e-mail account. Earlier that day I decided to sort through and organise my e-mails. Realising it would be a laborious task I started by deleting great wads of e-mails which I could tell from the title were trash. Essentially, I think Helen and I were going through the same thought processes; discarding parts of our hoards which were blatantly worthless accumulations.
I thought little more of this, until last weekend when my friend and I were discussing hoarding and he pointed out that the advent of electronic storage has allowed people to collect items such as films, pictures, notes, music and games without having to physically own 100s of DVDs, CDs, papers, books etc. This made me wonder, is collecting, storing and never deleting electronic material comparable to the hoarding shown on Channel4?
The obvious difference is that hoarding results in physical masses which take up space in a room, whereas ‘electronic hoarding’ is condensed into much smaller (yet infinite) spaces such as microchips, hard drives and even the web. Do items which exist as physical masses rather than transient electronic files mean more to us? Are the attachments we feel towards these things more salient than the processes involved in keeping media files?
As Illich pointed out in the 70s, behaviours which do not fit in with societal values come under the medical gaze and are often classified as disorders and illnesses. For example, gambling money and playing sport may offer the similar buzz of winning, but only gambling is considered as a physical addiction in a society where we’re expected to save our money.
Hoarders manage and organise their stuff in ways which deviates from what’s expected. The erosion of living space is problematic as it inhibits a ‘normal’ life style. But at what point does collecting become a disorder? Does the disorder stem from accumulating things, or not being able to get rid of them? Is it easier to keep and delete electronic files? Are people with bigger houses less likely to be hoarders because they have places to put things? And what about museums, are they pathological? Is the nature of the attachments we make to physical stuff different? Or are electronic files just exempt from medicalization because they don’t get in the way of ‘normal’?
Answers on postcards please (pretty ones which I can keep and add to my collection).
The concept of ageing in UK always seems to be presented imbued with negativity. The discourse is one that is tantamount to failure. People fear getting old as they try to appear younger and combat effects of ageing. Scientists research how to stop ageing process in genes; electronic puzzle games are marketed towards older generations claiming to keep their minds young; people dye their grey hairs and some even go under the surgical knife to iron out the wrinkles in their skin. Policy and media are focused on the ‘problem’ of our ever ageing population and the strain this will cause our healthcare systems. Pensions have also become a hot topic as citizens are expected to work for longer and into their old age to help pay for the care they themselves will need as older people. As well as older people having the most complex healthcare needs, the media often portrays this group as the most vulnerable and as those whom are most likely to be neglected and subjected to poor quality healthcare.
Getting older as a UK citizen seems pretty grim …I’m moving to Japan.
Welcome to my new blog!
I have been meaning to start a blog for ages. I feel a little nervous and strange about throwing my thoughts out there, but hey, let’s just see how it goes. Watch this space, as my very first (proper) post coming soon (hopefully)!