Well lets first wait till there is a web 3.0 and EBM and web 2.0 mingle insofar as this is possible.
I do not believe that patient stories can provide objective evidence that is as rigid as the evidence obtained from good clinical trials, except for instance in case of adverse effects which appear to have an obvious cause (see for instance my post http://is.gd/4DGK and the post of Dr Val “Consumer-Generated Clinical Trials? Research Minus Science = Gossip” http://is.gd/anlL). I do believe however, in a patient-centered approach.
In the intracranial example it is already evident that there is no benefit. Why test any further individuals to find out if a specific condition would make any difference? Of note, lowering the intracranial pressure by corticosteroids did not prevent mortality.In other words, beware of surrogate markers.

@Creaky
You raise an important issue: “Why isn’t there ONE guideline on a particular subject?” Recommendations may always differ per country and even per specialty, but the evidence itself may not (only whether it is applicable may be dependent on other factors). Therefore, there should be one basic guideline containing all the evidence and this should be freely available. A kind of basic ‘fact’book.

Although Dutch, I do search http://www.guideline.gov and other English language databases. In fact we nearly always start with searching for aggregate evidence.Not to blindly follow the protocol, but to find the evidence there is and look whether it is applicable.

This is a difficult source to point to – as “it” doesn’t exist in one place (i.e. Medline, Cochrane Library, Scopus, Up to Date, etc) nor would there be complete (or enduring) consensus on such clinical guidelines or standards among physicians at different levels of clinical experience (or even from hospital to hospital, or country). Hers was a question I could not answer fully.

I recommended that she look at http://guidelines.gov, professional societies such as American College of Cardiology or American Heart Association, etc. and do a thorough search on Medline.

However, she is an American. Those from Canada, Netherlands, UK or anywhere else would be looking at different sources for similar (but not the same) standards.

To hand her one URL to locate universal standards of clinical practice for (example) inoperable pancreatic cancer? That I (and many of us!) would love to get our hands on such a source.

Your blog is great, thank you.
Creaky

Where patient stories provide objective evidence. Our evidence can become more precise with more information. For example, in your intracrnial pressure example, we will be able to better distinguish the different types of pressures and provide the right treatment in the right case, all based on the collective knowledge of web 2.0.

In my view bringing in a little more web 2.0 in EBM is easy, but really integrating the two will be far more difficult because the inherent differences.
The first thing that has to be done is to get a clear view of what web 2.0 and EBM exactly stand for. There is a lot of prejudice about the two.

As planned my first one or two posts will be about the often wrong interpretation of EBM -by medicine 2.0 and medicine 1.0 sources/people (see Ravi’s remark). An important next step is to find out why there are practical gaps in EBM, as Anne Marie puts it: why does EBM seemingly fails? Is it too time-consuming (dr. Shock) or not really transparant (anon, sarah), or not always practical? I would like to hear your thoughts about that. I think it would be good to go into the limitations of web 2.0 as well. And then the integration, EBM2.0, what can we achieve, how should it be done?

Did I miss something? Do you have examples yourselves, thoughts? Please let me know.
Love the discussion, Jacqueline.

We’re Web 2.0 leaning, but working to integrate EBP. A balance can be found.

Very insightful post. I agree that integrating EBM and Medicine 2.0 is important and difficult task. When we have both working together, the people and patient centered conversations in Medicine and Health 2.0 will no longer be limited to personal stories and anecdotes but will become data-centric repositories of personalized medical information and learning.

Regards,

Ravi Sohal
remakinghealthcare