Nice to see you here and thank you for the article!

Look at http://askformesothelioma.blogspot.com/ for an example of what can be achieved in terms of free, fast, moderated, widely available dissemination of knowledge.
Thanks

Yes, thanks for the introduction to Knol. I think you’re right about new tools I’m venues such as JoPM will enable more rapid outcomes and dissemination.

DKA

Great to see you here and thank you for the article!

There are upcoming solutions to help all of us deal with the publication “lag time”. The one that I have been studying and may soon use for portions of the Journal of Participatory Medicine, is Knol, the publishing platform from Google that is currently used by PLoS Currents to maximize the fast dissemination of peer-reviewed scientific material about H1N1.

Look at http://knol.google.com/k/plos-currents-influenza for an example of what can be achieved in terms of free, fast, moderated, widely available dissemination of knowledge.

I hope I didn’t create the wrong impression. I personally don’t assert that everyone does or should want the same thing – IMO that would defeat the whole idea of empowering the individual. And nothing could be more important to me than patients having the right to keep confidential anything they want to.

DKA,

What a pleasure to have you here! Thanks for stopping by!

Have you read the linked item in the post about the “lethal lag time”? I’d love to hear your thoughts. And yes, I also love the idea of using social media to transform this lag, during which the information exists but hasn’t reached the eyes that need it.

In my ACOR kidney cancer group it’s common for people (“just patients”) to bring new information to their physicians’ attention, because of course the patient has time to be a deep specialist. Not an oncologist, but deep and focused.

I hope you’ll consider writing something for the Journal of Participatory Medicine about this. We seek articles. Please see the introductory essays at JoPM.org.

DKA

I’m wondering if the same issues around privacy exist for controversial diagnoses. For example, psychiatric patients may not want their records to be made fully electronic, for good reason. To this day, discrimination exists even within the medical community against psychiatric patients who have physical illnesses. Which is why they tend to have higher rates of morbidity and mortality than others.

It can literally kill you if a Doctor finds out you are on antidepressants.

And employers? Automatically fire anyone with a psychiatric diagnosis. Child welfare authorities are more than happy to seize children from parents on a precautionary basis, with no evidence of harm. Even though patients who take their medication are better workers, and better parents.

Same for women who have had abortions, or even prenatal diagnosis. In the old days, they would have been recorded correctly in paper files but only billed as D&Cs, which could be post-miscarriage D&Cs, to protect the lives of Doctors and the identity of patients. Pro-lifers have stated quite clearly that they will kill women. Do you think they can’t hire a hacker? I bet they can.

I appreciate that security exists for people concerned about privacy, but the problem is that even one slip can destroy a life, or destroy a career. And the penalties so far are a joke. They need to be jailable offenses.

A leg x-ray is not the same thing as a depression diagnosis.

So I am quite happy to sit back and wait a nice long time for E-Records. I like staying alive.

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