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April 30, 2007

An experiment in live blogging

I'm sitting in the Basic Science Research Building Auditorium listening to a presentation by Franklyn G. Prendergast, MD, PhD, the keynote speaker for the NCIBI annual meeting.

I'm using this as an experiment - I'm blogging Dr Prendergast live to see how I manage it and how it works for me. This is live and therefore by its nature imperfect; this should be considered a sharing of my notes and not a transcription of remarks or meaning. Any errors are mine and not the speaker's.

Topic: Designing for Individualized Medicine

Setting objectives at start of program for any and all diseases

Research objectives:
epidemiology, etiology, progression

Clinical objectives:
to prevent or predict disease
Absolute prevention not possible but can mitigate risk
design effective interventions

Education objectives:
piblic and professional, at all levels
importance of understanding statistics

Requirements:
Need to understand population characteristics in order to understand individual variations and their consequences

Where do we get population data? Clinical patient databases + biobanking placed in integrated database of controls and disease states

Informatics and computational biology

Ultimate outcome is improved quality of life and/or cure of disease

inter-disciplinary and collaborative approach required - look at both basic sci and clinical findings to understand individual in context

Center for Individ Med (CIM) - each one different depending on institution and population

Redefine Disease Risk/Prevention
using Biomarkers
modified by environment, infections, behaviors, nutrition, genomics, toxins

Can't answer individual questions of risk/prognosis with population stats

CIM Tech support:

Need huge computational clusters to analyze the data
Need huge data sets - genomics - with types of data integrated

Biomedical Informatics and Systems Biology huge domains - need community not just a department working on this

Discovery and Development Program steps
Biomarker Discovery
Biomarker Assay
Assay validation
Diagnostic validation
Launch (Kits, instruments, reimbursement, etc)

Need to be very sure of results esp in the press or will confuse the public

Is IM hype?
no, it's what medicine has always wanted to be

Do we really need all this data and infrastructure?
Role of informatics is to simplify - need to cluster data in a way that makes sense - but for now, need all the data before we can build accurate clusters

What is the role of biomedical informatics?
This is very complex data - highly networked
role of informatics is to standardize formats for data

also, pattern recognition; define accuracy; validation

Idiosyncratic nature of medical institutions works against national EHR

** Have to convince clinicians and patients that the info presented is real and valid and can be relied on/acted on **

Where do we start?
Already started - NCIBI good example

What are our societal responsibilities?
Science advances more rapidly than scientists can deal w/ the changes

Need to address societal issues
Simultaneously and in equal measure w/ scientific problems
cannot ignore privacy, ethics, morality
information has consequences in human behavior, e.g., genetic diagnosis of Huntington's Chorea

At present 32 diseases associated with genetic snips
On one hand - allows intervention
Other hand - response of individual varies by age and environment
But - public wants the tests and is cynical ab out risk

And of course, who pays for all this?
How many tests do we need?
What level of certainty?

In conclusion:
Respect public concerns
Find effective results
Don't announce to media until certain
Collaborate as much as possible
Think about pain management and other indirect disease mgt issues


Posted by janeblum at 05:07 PM | Comments (0)

Preconference Newsletter, MLA Leadership & Managment Section

April 2007 - Leadership and Management Section is a wiki-based newsletter for the section. Check out the wiki and the newsletter, and follow the link to the PDCAMM wiki. A good opportunity to catch up with the section's activities as well as see a couple of wikis in use.

Posted by janeblum at 04:18 PM | Comments (0)

April 13, 2007

I like it!

Thanks to David Rothman for highlighting Ratcatcher's blog and explaining the name which will make no sense unless you go to his post New MedLib Blog Has Nothing to Do with Tuna. I love the humor, the name is perfect, and you can never have too many blogging librarians. So go visit OMG tuna is kewl and say hello.

Posted by janeblum at 04:07 PM | Comments (0)

April 12, 2007

Is it okay to say "I told you so?"

The Chronicle: Daily News Blog: It's Teamwork, Not Solos, That Makes for Discoveries, Research Finds

Librarians have been saying this for years. Medical librarians and medical educators both have stressed the point in curriculum revisions. Funding agencies and publishers worship interdisciplinary projects.

So why does the iconclastic loner, the eccentric genius, remain the paradigm for scientific progress?

Posted by janeblum at 04:40 PM | Comments (0)

April 10, 2007

Libraries and Technology: MedLine, circa 1978

Go ahead, tell me you miss the good old days. Here's a refresher:

Tame The Web: Libraries and Technology: MedLine, circa 1978

Yes, it was a giant leap forward from punch cards and teletype, but I'm happy that odds are I'll never need to see or use another piece of thermal paper for search results.

I'll forgo relating my recent attempts to explain print Index Medicus to a medical student. It's hard to describe in words her complete bewilderment at the whole concept.

Posted by janeblum at 10:06 PM | Comments (0)

At last, a publisher boards the cluetrain

Lorcan Dempsey's weblog: Discovery at the network level

Posted by janeblum at 07:15 AM | Comments (0)