I agree: lack of a gold standard is a major issue in elicitation of patient values.
Would the conversation be advanced, however, by defining elements of
better vs. poorer criteria?   For instance, a study that validated a value/preference
eliicitation or decision against long-term satisfactilon/outcomes would
be a better criterion than one that had only immediate value expressions.
Values / decisions might be better elicited after the patient were fully informed 
than when the patient was uniformed.   There would still be disagreement, 
but such criteria would help us to distinguish weaker from stronger information
about values ... ..

Best regards to all ...




>>> "Djulbegovic, Benjamin" <[log in to unmask]> 8/13/2007 8:57 AM >>>
 One, of course, needs to distinguish between evidence and
decision-making. But, even when we do, the fundamental problem that is
frequently neglected in the discussion like this is that there is no
such a thing as "gold standard" method for elicitation of patients'
values. Or, in the other words, there is no such a thing as "gold
standard" of rational decision-making (which is the reason why normative
and descriptive theories of decision-making more often than not disagree
with each other).

 

I think explicit acknowledgements of this problem can help us move
toward better definition of "rational decision-making", which is what is
desperately lacking.

 

Benjamin Djulbegovic, MD,PhD 
Professor of Oncology and Medicine 
H. Lee Moffitt Cancer Center & Research Institute at the University of
South Florida Department of Interdisciplinary Oncology, MRC, Floor 2,Rm#
2067H

12902 Magnolia Drive 
Tampa, FL 33612 

e-mail:[log in to unmask] 
e-mail:[log in to unmask] 
http://www.hsc.usf.edu/~bdjulbeg/ 
phone:(813)745-4605 
fax:(813)745-6132 

 

From: Evidence based health (EBH)
[mailto:[log in to unmask]] On Behalf Of Rakesh Biswas
Sent: Monday, August 13, 2007 00:19
To: [log in to unmask] 
Subject: Re: risk calculation and the clinical encounter

 

Thanks John, I agree that risk estimation is important but then it may
not be all that needs to be addressed in a clinical encounter. 

Dr Armstrong ( a dedicated EBMer in a US residency program) has
identified a few queries that move beyond risk calculation in EBM and I
am not sure if we have the answers: 

How do you gauge patient preference and values in the face of complex
and multi-faceted decision making? How might you articulate the pros and
cons of various treatment options in a clear, honest and meaningful way?

 
How do you reach common ground with patients when the neatly packaged
evidence is at odds with patient expectations while remaining respectful
of the principle of patient autonomy? 
 
How do you teach learners and colleagues to deal with the uncertainty
engendered by conflicting bodies of evidence or diametrically opposed
interpretations thereof by various special interest groups? 
 
What conversations might you have with the patient when the evidence
complicates the picture and hence the decision making process and the
decision to test or treat is in many ways a "toss up"? 
 
How do you find reasonable answers to clinical questions that are of a
complexity that is not conducive to the framing of a clear clinical
question? 
 
What do you do if the best-available evidence runs counter to the
so-called "standard of care" in your medical community? What if the
"usual" treatment is of uncertain benefit but the potential harms of
such a treatment are well known and can be quantified? 
 
What language might you use to facilitate the particular patient at hand
making a decision that makes sense to them taking into account their
broader context (cultural beliefs, educational background and literacy,
numeracy and whether they are "risk adverse" or "risk tolerant")? 
 
What are the medico-legal and ethical ramifications of acting on good
evidence that is not considered "usual" care? 
 
Would be interested to know the answers but my guess is that this may
constitute a question flooding that is in variance with the focussed
query approach. However we could take them one at a time and perhaps
each one of us could work to answer some (not all of these). 

rakesh



On 8/9/07, J C Platt <[log in to unmask]> wrote:


Dear Doctor Biswas
A very interesting paper.
I think at present I would rather risk treatment based on strong
evidence, even
though it may not apply to me as an individual; at least I have some
idea of
the level of risk incurred. 
My best guess is that leaving it to the doctor to personalise the
treatment
means I have no way of estimating the risk ( what is the doctors
knowledge
base,how up to date are they etc.)  My reading of the history in this
area 
would suggest risk may be high. Perhaps this risk comparison is an area
for
further study.
Yours sincerely John Platt

Quoting Rakesh Biswas <[log in to unmask] >:

> Wanted to share this article from our institute written in
collaboration
> with colleagues from
> other institutes.
> Click on:
>
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1365-2753.2007.00837.
x
>
> It begins as an autoethnographic reflection of an individual physician
> exploring the relationship between his largely qualitative day to day 
> clinical activity
> with individual patients and population based average patient data
> (that is largely quantitative).
>
> Following this write up we have been inspired to work towards trying
to 
> leverage ICT
> for answering individual health information needs and are grateful to
be
> able to keep
> learning from colleagues across multiple disciplines from the pure
clinical
> to pure informatics. 
>
> Another issue is much as one would love to publish open access we were
> compelled to publish with a closed access publisher as it is difficult
to
> obtain organizational funding for
> the fee open access journals need (although they do give generous
waivers on 
> an individual basis).
> Interestingly even closed access journals seem to be catching on to
the idea
> by offering
> individual authors the option to pay to unlock their own articles and
make
> them open.However
> I have the provision to freely share the pdf full text if you are
interested
> in reading the
> article.
>
> rakesh
>