In this week's blog post the founder of Yes to Life, Robin Daly, discusses the conflict between evidence-based medicine and patient choice. Can the two ever get along?
Listen to any news broadcast and you’ll be
almost guaranteed to hear the word ‘evidence’ - usually several times. It’s the
buzzword of our times and is used to try to establish credibility and
trustworthiness in all walks of life.
And this is important, of course, All too
often, vast amounts of effort, time and money have been wasted on initiatives
for which there is no sound basis. Unfortunately, evidence is wildly variable,
and often doesn’t fit the bill as a ‘sound basis’. This is notably the case in
medicine, an area where, in a relatively short period, evidence has become
king. A recent conference I attended, at which the word ‘evidence’ must have
been up there in the top ten of all words used, prompted me to think about the
nature of evidence and what really amounts to trustworthy evidence. The train
of thought that resulted in this piece was prompted by a representative of NICE[1] who said words to the effect of ‘… even including some data from
patients’, as a sort of afterthought.
Our healthcare service currently has two
policies that are both seen as central, but work in direct opposition to each
other: evidence-based medicine (EBM) and patient choice.
EBM has inevitably become steadily more
proscriptive. Despite its promising beginnings as an attempt to bring some
rational basis to a largely unscientific medical system, and even though its
original intention was to support clinical decision-making, in practice,
medicine has become increasingly ‘cookbook’, and doctors who stray too far or
often from the recipe are laying themselves open to harsh criticism or even
disciplinary scrutiny.
Patient choice, on the other hand, seeks to
make medicine less proscriptive. Patients often have very varied views of what
constitutes good medicine, and so the spectre rears its head of a patient
making a choice that fits well with their personal philosophy of healthcare,
and that they would like for their own physical and mental wellbeing, but that
is not considered good EBM.
How are we to make any progress with patient
choice? This single issue threatens to condemn British citizens to an
antiquated model of care that has more in common with the 1950s than with
virtually every other aspect of our modern, consumer-centred world. The answer
could lie in a re-examination of what constitutes good evidence.
As a modern consumer, I have a range of choices
whenever I want to choose goods or services:
1.
I can read the manufacturer or
supplier’s sales literature
2.
I can consult an ‘expert’
review
3.
I can look at the ratings of
previous customers
These of course, are all in addition to going somewhere to look at a
product or talk to a supplier. But assuming, for the sake of argument, that we
are buying over the internet, then we have the three forms of ‘evidence’ above
to inform our choices.
Well clearly, the manufacturer / supplier is
likely to do a thorough job on explaining the advantages and strengths of their
offering. We may enjoy reading the sexy brochure about that fabulous new car,
but it will probably tell us relatively little about the real-world experience
of owning it. So, its usefulness is limited to some facts and figures.
In contrast, we traditionally turn to
‘independent experts’ for an unbiased and in-depth view of which car really is
the most reliable or economic, which computer is the fastest, and so on.
Experts certainly have their place and can take some of the grunt-work out of
narrowing down options. But all too often,
scrutiny reveals that the ‘independent’ tag is not as watertight as we
might have expected. The motivation for huge businesses to want to influence
experts to be more favourable than they might otherwise be, is an obvious one,
and can often result in our trusty experts being exposed to practically
irresistible levels of inducement. Even if not directly influenced in this way,
a ‘reviewer’ is likely to constitute a one-man-band, incorporating a host of
opinions, hobby-horses, blind spots and general subjective thinking. For this
to have no impact on the resulting reviews is implausible. A team of reviewers
may seem a route to more objective thinking, but the power of ‘group-think’ is
too well documented to be ignored.
The third option is an interesting and recent
one. For certain, many of the reviewers are similarly afflicted by biased
subjectivity in the way that an expert can be. But these are all people with
their own real-world experience of the goods or services in question, and
they’re not subject to the same levels of group-think that a team can be. If
there are three reviews and one of them is a rave 5-star number, and one a
complete 1-star bin job, it tells me very little. But if, as happened to me
when choosing some binoculars recently - my first pair ever, and a subject I
know nothing about - more than 1,200 reviewers give an average of 4.8 stars and
they are the top-selling model, then that’s all I need to know.
So, what we have here is a hierarchy of
evidence. EBM has its own hierarchy of evidence, but it’s quite clearly rather
different.
In my consumer (read ‘patient-centred’) example
-
•
No 1 is what I shall call
1950’s evidence. Its what people got back then - they probably thought it was
okay, and anyway it was all there was
•
Then came along late 20th
century consumerism and the rise of No 2, the ‘independent expert’. This seemed
fantastic at the time, and some people still ‘believe’ in them today
•
But the 21st century is
definitely the territory of No 3, the ‘consumer rating’
From my perspective, No1 is practically useless
and always to be viewed with caution; No 2 can be useful, particularly when No
3 is lacking, but No 3 is the no-brainer, immediate, go-to type of evidence.[3]
Now let’s examine the hierarchy of EBM. Right
at the top, the ‘gold-standard’ of EBM is the randomised controlled trial.
These are, in the main, the product of the companies that manufacture the
product or deliver the service. Therefore, in my ranking as a consumer (read
patient) this evidence is extremely poor.
EBM seeks to counteract some of the epic
shenanigans of the pharmaceutical industry by forming bodies to regulate what
choices are made by the NHS, and not to simply take the industry’s word that
their products are fantastic. Well this is definitely a step in the right
direction, but as in the consumer world, these ‘independent experts’ are
subject to all the same forces as their consumer equivalent. Investigations
have regularly exposed the levels to which the members of such regulatory
bodies (and ‘trustworthy' charities) are enticed to be less than objective, how
a ‘revolving-door’ exists between powerful positions in industry and in
regulation (and charities) and the stark level of ‘group-think’ imposed on
members. One that comes to mind, but is so accepted and so huge as to be
mistaken for the very ground on which healthcare stands, is that to be even
considered as a medicine capable of making people well, it’s pretty much the
rule that a substance must be a patentable, new-to-nature toxin - in other
words a product of the pharmaceutical industry. Tragically, all too often the
regulators are clearly seen to be defending the interests of industry, rather
than of the public.
As for evidence from patients, this is
considered the very lowest form - merely ‘anecdotal’- so much so that there is virtually no
interest in even collecting it. Just imagine the scenario - the block-busting
drug with the incredible pharma-funded trial results, given the stamp of
approval by the pharma-supported regulatory body gets a 1-star rating from
users who say they don’t feel any better and the side-effects are destroying
their quality of life. Who will benefit from that ‘consumer’ knowledge? Why
consumers of course. And what threat does such information pose? The failure to
get away with a decent ‘honeymoon period’ of massive profits before everyone
realises they’ve been had.
The point I’ve been trying to illustrate is
that at present EBM is in direct conflict with patient choice for one simple
reason: the hierarchies of industry and patient evidence are completely
opposite. From where I stand as a
patient / consumer, the most trusted evidence is the least trustworthy, the
least trusted, the most reliable. Is it any wonder that healthcare is failing
its patients?
In one deft move, we could overcome this tragic
mismatch. Healthcare could step into line with the rest of the deliverers of
services and products, by changing EBM such that what patients, consumers of
healthcare, have to say about a medicine or procedure is the MOST important
piece of evidence - not an afterthought, or nice-to-have, feel-good extra, but
one that the NHS pursues voraciously, in the interest of delivering the very
best to the most patients. This way they would be living up to their
constitution. Patients would benefit from knowing and receiving the most
effective choices; the NHS would benefit by increasing patient satisfaction and
outcomes and thereby reducing costs; and
even the apparent casualty, business, would benefit from a level playing field
in which aims shift away from the almost exclusive focus on the bottom line,
towards a balance between profits and patient-endorsed effectiveness.
At a single stroke (okay, maybe a bit poetic
for a complete inversion of an international system!) EBM and patient choice
are working together, pushing in the same direction, building better healthcare
for us all.
[1] National Institute for Heath and Care
Excellence nice.org.uk
[2]
.gov.uk/government/publications/the-nhs-constitution-for-england/the-nhs-constitution-for-england
[3] I am ignoring the potential for dodgy dealings
with consumer rating results. Although possible, it would be commercial death
for any business if discovered
