Blog: "The patient voice: a biased or valuable source of information?"

Andy

Andy

Retired committee member
"The education department of our academic hospital is proud to be ‘patient-centered’. Consequently, a patient was invited as the first keynote speaker at a retreat for teachers and some students. I found her story impressive and insightful; some listeners were clearly moved. I kindly asked the PhD-student sitting next to me what she thought of the speech.

“I don’t know”, she replied. “I can’t listen to patients. When they start to talk, my ears just stop working. The only thing I can think of is N=1”. She explained that in the clinical epidemiology lectures she had been taught that stories of individual patients are always biased. “If another patient had been invited, she would have told us a whole different story”. The other biomedical PhD-students nodded: they agreed."

https://blogs.bmj.com/pmj/2021/05/17/the-patient-voice-a-biased-or-valuable-source-of-information/
 
Andy said:
She explained that in the clinical epidemiology lectures she had been taught that stories of individual patients are always biased. “If another patient had been invited, she would have told us a whole different story”. The other biomedical PhD-students nodded: they agreed."
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Right. So instead of learning proper listening skills they don't listen at all. What could possibly go wrong?

Lots of professions have to listen to input from a range of people who will tell their story from their perspective. It is up to the person listening to that story to also ask pertinent questions and listen closely to make sure they get all the information needed.

The active, skilled listener, instead of drowning in extra and irrelevant detail, should be capable of finding the core elements that match in each case which tells them how the issue affects different people in the same way. They also learn how that same issue affects people differently.

Lots of people use these skills everyday. People who work as playground supervisor, to police officers taking witness statements, those taking victim impact statements, engineers troubleshooting are just some examples.

Frankly, I'm not sure what's worse. The gaping hole in this person's skill set or their lack of awareness of that gaping hole.
 
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Trish said:
These are lab scientists, not clinicians, so in their work n=1 is not the way to go. But on a human level surely they would be interested.
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This is what they'd been taught in epidemiology lectures so how an event or disease affects people be it in the same way or differently provides a wealth of information about the disease/event.

Remember Simon Wessely is an epidemiologist - perhaps that's why he thought it appropriate to widen the diagnostic criteria for ME/CFS & shoe horn all ME or CFS patients into the same treatment path and ignore them when told the treatment wasn't helping.

If instead he'd actually listened to the hundreds, if not thousands, of n=1, noted the similarities & differences in patients and their reports of how the illness and treatment affected them then it's very likely the quality of life of an ME patient would be much better today.

This stuff really matters. The more technical a role them more important it is to remember to listen and not isolate yourself from the subject. You just have to learn to sift and organise data better.
 
I think a point is that it's not about one patient's voice. While it's important to listen it may not be informative all on it's own. It's when you keep listening that you start to get some sort of new picture possibly. The idea that because this is one person n=1 story that it is meaningless is a matter of some perspective.
 
And yet it was actually easy to predict the scope of what became Long Covid by simply listening/reading patient reports. There is a lot of information in there. It also happens to be the first step of the scientific method: follow the evidence.

N=1 is poor, but x*(N=1) is a great source of information when x gets large. To get a useful picture out of it you do have to do several N=1, so you can't just tune it out every time. Medicine is clearly not capable of doing that because they try to force everything they hear into predefined boxes.

Yes, another patient's story would be different. By N=10 you start to see some patterns. By N=100 you see themes and sub-groups. By N=1000 you get a full picture as long as the sample is representative. But you can't get to N=1000 without first doing N=1, then again, then again and again. Without bias, prejudice or expectations.

The results of failing to do this speak for themselves. But the failure is never acknowledged, flipped into rousing success, and so on they go on failing and failing. And they feel so proud of it it's almost a boast: "I never listen to patients, they bore me". Yeah, it shows. It really shows.
 
@Snowdrop

"...when you keep listening..."

Yes.

I have often puzzled about doctors who keep listening to fairly, or relatively similar symptom descriptions from ME patients, however they don't seem to accredit any biomedical validity to them. They also don't seem to wonder about all the symptoms that don't fit the Fukuda, Oxford, or other more abbreviated definitions. They don't seem to see, or at least may not act on patterns that emerge. There may not be an in-depth investigation of these rogue symptoms - the ones that don't fit in the more basic case definitions. Even if several patients report the same rogue symptoms.
 
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Jonathan Edwards said:
Was that said. They were PhDs but if they had clinical epidemiology lectures they would probably be clinical Phds?
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You may be right. I think the article is ambiguous. These were the parts that led me to think they were lab scientists, not clinicians:
'The other biomedical PhD-students nodded: they agreed.'
'In this era of ‘patient-centeredness’ many biomedical researchers will not openly admit that they agree with...'
'Then I realized that not only our future researchers, but also our future clinicians studied this reader, in their Evidence Based Medicine (EBM) courses. ...'
 
This is intriguing. It seems to highlight how easy it is for us to want our cake and eat it.

I am pretty sure that the author in this opinion piece is a staunch BPS type mind. They think that there is too much talk of bias. Haven't we been banging on for years now about not enough talk of bias?

I think I agree entirely with the quote from Prior and in particular: What is more they can often be plain wrong about the causes, course and management of common forms of disease and illness.

Nobody should be confusing the patients' accounts of what it is like to be ill which we can call lived experience if we want to be buzzwordy, and patients' accounts of what they think is causing their problem which is often as biased as hell, especially places other than S4ME.

Listening to patients describe what it is like to be ill is called taking a history and nobody is likely to think it is to be ignored. I strongly suspect that the 'PhD students' were not in any way suggesting ignoring this. Listening to patients' views on what they think the problem is may be fine if they are S4ME members but what if the patient has been specially chosen by some touchy-feely BPS loving medical education department to illustrate some politically correct point to the audience. What if a Henrik Vogt type head of department chooses to bring Paul Garner along to tell everyone their emotional story and how it proves the causal importance of positive thinking.

The mood music I hear in this piece sounds all too close to that.

For me 'patient-centred' is a political term used to push touchy-feely mostly BPS type ideas. It is loved by the GPs who scorn the biomedical model of ME. It is loved by Rona Moss-Morris. It is used to great effect by those who are now manipulating the demise of PACE to say that of course they never did things that way , they were always patient-centred.

In other words I think this piece is full of just the sort of bullshit we have been trying to flush out of the system.
 
Andy said:
She explained that in the clinical epidemiology lectures she had been taught that stories of individual patients are always biased. “If another patient had been invited, she would have told us a whole different story”. The other biomedical PhD-students nodded: they agreed."
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This is actually a complete fabrication. No clinical epidemiology lecture would teach that a patient's account of their illness was biased. That would make no sense. They would teach that using one patients account as evidence of a causal relation is likely to be biased. The guy recalling this conversation is deliberately misremembering it in order to make a trendy point.
 
Jonathan Edwards said:
To me it is actually quite frightening that the Postgraduate Medical Journal has material like this now. The BPS party line has soaked in to everything. Just as it is frightening that NICE subcontracts to 'Clarity" to give the bullshit to GPs even if the ME/CFS committee got things right.
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It seems like you gave evidence to an expert group who grilled you - reasonable; i.e. basis for the revised NICE guidelines.

It also appears that NICE have grafted another entity on - the folks who "interpret" the guidance/guidelines produced by the experts. Presumably they make the guidelines more appealing - OK they're also wrong, i.e. not consistent with the guidelines, but they are more likely to be welcomed by the users (GPs). It all sounds mad and something that should be flagged up - I wonder which public body/Department sponsors/monitors NICE - might be a starting point?

@Caroline Struthers [EDIT] - just seems a mad waste of money and it may modify sound [ME/CFS] guidelines back to the unproven CBT/GET stuff.
 
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FMMM1 said:
It all sounds mad and something that should be flagged up - I wonder which public body/Department sponsors/monitors NICE - might be a starting point?
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We may have to face the fact that flagging things up doesn't achieve much these days. I won't go political but what's on the front pages in the UK seems to show that nobody takes a blind bit of notice of anything.

But on the other hand the same forces (mostly internet) may mean that people bullshitting have to constantly debase their currency and become more and more implausible in the process. Everyone knows the reality about PACE now - and it was people here that nailed it - I just packaged it for the NICE statement.

That said, I think that people like Caroline, Tom, David, John P, Michiel, etc. keeping on gnawing at the bone is powerful. We have one clear example of a misinformation system crashing in the last year. There seems to be a worrying lack of anything else much crashing but maybe it will come.

And of course plus ça change plus c'est le meme shoes as they say. Yet maybe Covid will knock some sense into people. Then of course there's que será, será.

(Bon mots are easier than making one's mind up.)
 
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