Jon Brassey wrote:

> The content of TRIP is exclusively aimed at health professionals, so 
> this situation creates potential problems but many more opportunities, 
> for instance:
> * What issues arise from patients accessing material that is not
>   aimed at them?
> * What can we, at TRIP, do to help patients appropriately understand
>   and utlise the evidence?
> * Does this show a 'failing' on the providers of patient information
>   (again that could be seen as an opportunity)?
> 
> I'm sure there are lots of other issues to be considered.
>  
> I would welcome any thoughts from the group.

I would focus on the more mundane aspects of this issue. The following 
are generalizations, of course. Generalizations are dangerous, but 
necessary when addressing a broad topic like this.

First, patients are not as natural with the language of medicine. If 
they do know some of the language, it is likely to be only in the narrow 
area of medicine that affects them directly. So examples from different 
disciplines are likely to be difficult for them to follow.

Second, they are far more likely to rely on resources that are not 
peer-reviewed. Conflict of interest, which is already a big concern for 
peer-reviewed publications, becomes even more of an issue for web-based 
sources of information. Patients need to distinguish promotional 
literature from more objective sources.

Third, many patients will have an active distrust (or at a minimum less 
trust) in organizations that physicians generally rely on. I don't mean 
to pick on any particular group, but for the sake of argument, let's 
consider a large organization like the American Heart Association (AHA). 
Caridiologists know the AHA because they attend their meetings regularly 
and they may even know members at the top tier of this organization. As 
such, cardiologists will be far more willing to accept pronouncements 
from the AHA without questioning them. The general public does not know 
the AHA and it may appear to them as a distant and impenetrable 
bureaucracy. Besides, someone who is unwilling to take his/her own 
cardiologist's recommendations unquestioningly is even more unlikely to 
take pronouncements from a far removed and anonymous group like AHA.

An active distrust of AHA is a good thing if it is not taken too far. 
The problem, of course, is if this natural distrust devolves into cynicism.

Fourth, we all have preconceived notions and prejudices, but those of a 
patient need to be handled more carefully. Experienced clinicians are 
used to rigorous debates among the experts and a bit of harsh language 
among sparring intellectuals will not bother them. But a patient who is 
new to the area and seeing the word "quackery" associated with a therapy 
that they initially have a lot of hope for is likely to be 
counterproductive. You have to be honest about therapies that are 
ineffective and sometimes downright dangerous, but it needs to be done 
in a way that is respectful.

Fifth, certain skills that doctors take for granted may need to be 
emphasized here. Patients may be new at this and may not understand how 
to access journals online. They may not know about the Cochrane 
Collaboration. They may need some help with basic anatomy. They may not 
understand all the information on a typical PubMed citation screen.

Finally, patients do have one advantage that doctors do not. Patients 
have the luxury of time. All the material about helping busy clinicians 
answer a question quickly can be dispensed with here. Tell patients that 
they should take time to read the parts of the paper that they would 
normally skip, especially the methods section. Show them how to pick out 
important information about the inclusions and exclusion criteria to see 
how the patients in the study compare to themselves. Have them look out 
dropout rates especially large dropout rates or dropouts that are 
differential across groups.

So what should TRIP do? I think TRIP needs to have a prominent link on 
every page that it produces with the words "Resources for patients". 
These resources should identify issues of particular concern to 
patients. Ideally, these resources should be tailored to the individual 
medical areas. Resources for cancer patients should be different than 
resources for arthritis patients. They're not different, of course, in a 
theoretical perspective, but patients are going to be far more 
comfortable if the materials focus only on the medical area that 
directly concerns them. There should be a lot of emphasis on evaluating 
therapies that are not in the mainstream of clinical practice and on 
evaluating resources that are not peer-reviewed. Material on 
considerations for patients considering entering a clinical trial would 
be nice. The resources for patients should include both your own content 
and links to other resources if people want to delve further into an area.

I hope this helps.
-- 
Steve Simon, Standard Disclaimer
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