Yes finally, at last I am going to release my Sherpa Plan!
Thank you to all who have helped form this unique set of operating instructions to help rescue the promise of personalized medicine.
Now to Problem Number One....
Lack of Public and Physician Education by qualified sources.
How many people have heard of NCHPEG? I have, they are the National Coalition for Healthcare Professional Education in Genetics and they are a fantastic resource. But.
Well, my team took a poll (non-scientific) of 100 primary care physicians........how many do you think have heard of this organization............6 and they all had spoken with a geneticist in the last 2 months. In other surveys, physicians state that they rely on the same media that patients do to receive information about genetics. That's just not right!
Friends......we have a big problem when the people who are supposed to be implementing genetics get their information from an unreliable news media. Why are they unreliable? They like everyone else are expected to do more with less.....thus fact checking has become a thing of the past........
So therefore, if physicians are going to use the Sunday Times as their information, then we are going to fact check it ourselves......
Together with Drew Y, we are creating a community to fact check genetics reporting. It is called HelixGene Foundation......Thursday we will have sent an email to over 1000 genetics professionals inviting them to join our community.....
Attention Media and Public Relations! You are now forewarned.....We will keep grades on all of you and post them so that the public and physicians who are reading your articles are given the courtesy of Peer Review!
Want to join our community? You need to verify your PhD, MD, or CGC credentials and then we will sign you up.
The Sherpa Says: If we can control the accuracy of information, we will avoid overselling genomics. Why is this important? To prevent articles, like the one of Dr Khoury in the NEJM essentially bashing SNP scans. The problem? PMDs viewed that article as marginalizing the whole field of personalized medicine. Not just the SNP scan! Trust me Dr Khoury, we need more than a treadmill to carry out personalized medicine.
Wednesday, September 24, 2008
Overselling Genomics, Sherpa Plan part 1
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9 comments:
I think your plan would work better by going directly to where the doctors work. Publish a short review book that that is concise that the doctors can use as a quick reference and to learn from. Hoping to reach doctors via the Internet isn't the BEST way to go about this plan. Hold seminars (at their place of employment), publish a review book like I touched on above, and get email address of doctors that would benefit from knowledge of genetics and send them a weekly/monthly news letter.
Putting together the Foundation for Genomic Health Education website is an ok idea. But honestly, most doctors are really busy and don't have time to watch a 30 minute or even a 60 minute video.
Also, having a doctor watch a video isn't the best way to learn. Talk to them in person so they can ask questions and make sure they understand the material.
A small percentage of the population MAY watch the videos.
I'm just trying to give constructive feedback to this plan. The better understand all doctors have in the area of human genetics, the better off the people of our World are.
Steve, given your requirements to join this community, would you or Andrew comment on his background in genetics?
Thanks for the feedback. Our community is for genetics professionals to review news articles and hopefully fix mistakes before they go to print. They already know genetics. We are hoping to catch the press' eye on this one. But as for the education of lay physicians, I agree maybe a 25 pager on this is key.....and just maybe......we plan to publish this in a month or so...
-Steve
As for Drew. he is a computer scientist....not a geneticist. He is the moderator and programmer.....not making any reports without physician review...
That being said he knows genetics better than most physicians....
-Steve
First you may want to do find out just how incorrect newspaper publications in the area of human genetics really are. Second, when you find incorrect reported findings, communicate with the author of the publication (provide a short and easy to understand explanation of why it is wrong and what it should say). Being able to offer a consult isn't very effective as there are times where a news release needs to be published in less than 30 minutes when a news story breaks.
You may first want to communicate with the journalist who publish genetic information and then work with the doctors...unless you are looking for higher patient demand..then go to the doctors first.
Be careful about conflict of interests.
If you really want to succeed at this plan, you may want to set-up an independent review group (no person in your group who will be working on the information collected) that will look over and search for newspaper publications so you can get a “real” view of how accurate or inaccurate publications in the area of human genetics really are. You can hire a clinical geneticists or a genetic counselor for this…but shouldn’t work with your group.
Hi. Launch was moved to Thursday morning due to health issues (mine).
-drew
@anonymous:
We already have some pretty good statistics on the popular press and will continue to compile these for publication.
"Being able to offer a consult isn't very effective as there are times where a news release needs to be published in less than 30 minutes when a news story breaks."
We will have a network that will span the globe and therefore be able to give your article the attention it needs 24/7.......
"If you really want to succeed at this plan, you may want to set-up an independent review group (no person in your group who will be working on the information collected) that will look over and search for newspaper publications so you can get a “real” view of how accurate or inaccurate publications in the area of human genetics really are."
If you want to fund this effort feel free we would be most happy to hear any proposal regarding this.
-Steve
As a primary care doctor, I can say with certainty that we completely lack the knowledge to cope with genetics in our offices. And that is even before the wave of information and future discoveries that will be upon us (and our patients). A good, respected website to which people can turn to fact-check genetics would be invaluable. I would definitely use such a site and refer people to it!
Odysseas
www.perspectivesonmedicine.blogspot.com
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