I was reading Daniel's Blog and this person's comments caught my eye...
"The marketplace for genetic testing is basically an uneducated one (with the exception of people who are really excited about it)."
I think she is right. To do the education to get someone to use this test will ultimately make them not use this test...because once you can understand the implications, you could understand that these tests are of limited value.......unlike Pgx testing...
Caveat: I like the people at Navigenics. I think they have great scientists. BUT, I am extremely skeptical of any physician who is working for this company to promote tests which are not clinically validated.....
She then goes further....
"Add to that, Navigenics also wanted to offer disease related testing (I'm leaving the question of clinical utility aside here since the only people who have thought usefully about that are the deCode folks, and apparently not the Navis, 23s, etc.)
So, they realized that to keep an uneducated customer happy while contemplating medically related information, they were going to need to make it easy for that person to pick up the phone and talk to an "expert". "
Spot on......too bad the expert is a genetic counselor who has no medical training in explaining heart disease, multiple sclerosis or anything other than cancer, prenatal issues "Family planning" or monogenic disease.......the model that they were trained for.... What would you do with a woman who had a systolic BP of 136 Elissa? Could you suggest anything?...Wouldn't it be smarter if they actually talked to doctors who understood what these tests meant and who had cared for people with these diseases???? And even with clinical utility aside, deCode has failed to prove clinical utility of their tests.....
The commenter is wrong again down here........but in an extremely correct way......
"That's what they got right. Personalized genetic testing is not about the test, which is a commodity, or the "report" which is useless to most doctors, mothers, etc., but the information, which is currently best conveyed through a person who can answer questions. And people cost a lot of money, thus the ridiculously high price."
Exactly, the cobbler issue.....but I doubt,
1. That the genetic counselor is getting paid 2000 per consult. If you subtract the costs of the test from the charge, that is what you get.....
2. That the counselor is even close to a replacement for a physician....not even close when it comes to adult disease management.......
But she is absolutely correct. It costs a lot to speak with someone, which is why VC always hated Helix Health of Connecticut's model of healthcare...Too bad for them. Patients are using it.....
Just then, she had an absolutely correct point, which is exactly what Navigenics hit square on the head......they were so right in this one way!
"Personalized genetic testing is about people getting attention they feel they need or want enough to pay for it, because they can't get it from their PCP anymore on their insurance co.'s dime."
This my dear is called concierge medicine and it is why Navigenics has partnered with the Internists and Family Practitioners of MDVIP........If not to bolster the impression that their unvalidated test IS Clinically valid (Very sneaky, guys)
But I wonder how MDVIP is doing, using these tests and charging patients for it.......since after all
1) In Navigenics Terms of Service, you can't use it for healthcare
2) Most Internists and FPs need about 6 months of genetics training to understand genetics
3) Most of the info in that report gives us no advantage clinically.
And then she nails the point home:
"Any company that can capitalize on that (regardless of whether the test is clinically useful or just hand waving) will have a market."
Have any of you watched Chicago? This is exactly what I call Razzle Dazzle 'Em.......baffle the people with bull$h!+ and they will think you are worth something.......Hell, it is how these companies were sold the Venture Capital in the first place.....
"Navigenics hit much closer to this mark than the other big 3."
I agree, hand waving and bull$h!+, precisely what this company is offering........otherwise they would have hired physicians to go over the reports with patients rather than genetic counselors....
That to me is the proof of what they feel is important........
For the millions they spent in NYC (there is no shop in SoHo) they could have had Geneticists and Internists who actually get this stuff. They could have them hired at 130k per year.....what's that? 10 Doctors who know what they're doing for a year or 20 counselors who won't tell the patients that they wasted their time on clinically useless testing?
Oh wait.......last time I checked, Navi didn't even have more than 3 counselors doing the clinical work. So if Navi is so into the clinical side, why didn't they hire enough people for the job......Nor did decode or 23andMe..
Oh wait, maybe they have? All 3 have an extensive marketing team and web development team.............. deCode , Navigenics , 23andMe
All are looking for more......
As for the commenter? She works for a company who provides services around bead technology.......
The Sherpa Says: All 3 of these companies are struggling to find themselves......as I have said before, no one knows the true value of these tests yet. Which is why they should be studied......in a rigorous, IRB approved fashion, not anecdotally........Dietrich, you should have had your team listen to me about a year ago when we spoke......I could have gotten you there quicker.........One test is called a one hit wonder....a platform.....is worth so much more.
Saturday, January 31, 2009
I was reading Daniel's Blog and this person's comments caught my eye...
Thursday, January 29, 2009
Example Navi: Who didn't know this was coming? I sure as hell did when I sat with their marketing team and they asked why I wasn't ordering their test....
I told them that I had patients paying less for our services for the year than for their test....Prior to that I saw their marketing survey on Gerson Lehman Group....thank for the quick cash Navi! There was the first time I saw the"scaled down test for 500 dollars"
IMHO, it was a non starter....Now for 499 and a year's access to your data......it is STILL a nonstarter.
In a short amount of time the price of these tests will be Zero Dollars.....
Those who survive this little pricewar will realize that the distribution platform matters way more than any individual test....
Too bad the 30 or so VC firms we spoke with didn't want to believe this.....now, it looks as if Amway or MarketAmerica may be a better investment after all....
But in all seriousness, these companies have a choice over the next six months...
1. Go medical with PgX and get the hell regulated out of you (No, Schmidt cannot protect 23andMe)
2. Go Novelty, with ancestry, innate traits, etc.
3. dissolve the testing and turn into a platform...
The Sherpa Says: All that glitters in this DTC space has been and will continue to be fools gold for at least the forseeable future.....No matter how many cocktail parties you throw SoHo....
Wednesday, January 28, 2009
Monday, January 26, 2009
Saturday, January 24, 2009
So I was flying through the air Thursday morning after a meeting in Tenessee the day prior. I ended up picking some interesting reading. It is truly amazing how reading can give you insight into topics and how things may evolve and change.
This is why literacy is so key. It gives us the ability to gain insight, which is why I cry for America with its less than 40% health literacy and far less genetic literacy.....
But here was my list
1. Harper's "Sick in the Head" February edition.
This article discussed how Obamacare will not likely be a hug revamping of healthcare.....but what I found out was exactly how poised McKesson is to take over the healthcare system. You see, they process 1/3rd of all insurance payments, nearly 90 percent of all prescriptions....even more importantly, they are developing a clinical decision support tool for genetic testing called Cue4.....personally, I think they may give Generation Health a run for their money in this space.
2. Wired Magazine 1.19.09
Multiple articles here
A.) "The Plot to Kill Google"
In essence they describe how AT&T and Microsoft are going to attack Google on multiple fronts including privacy threats by having google collect all of your information.....
B.) "DIY DNA"
Hugh Reinhoff M.D. is genotyping his child to figure out what is wrong with her.....am confused why they didn't describe Chromosomal Microarray testing, which I am certain he did, but they left out......what was funny about this article is that the DIY testing was being carried out by a doctor, which they didn't play up.....in essence making you feel that anyone with a buddy in a lab or a garage sequencer could do this on their own....which of course is Wired's take on this complex technology anyways......
C.) "Live Free or Drown"
The long and the short of it: Libertarians looking to escape taxation and the restrictive laws in the US are looking to open water to rule themselves........Sound Eerily familiar? By getting out into open water and building land platforms they could escape governmental regulations......
Hey, wait a sec' isn't Google trying to do the same thing with their servers...........Maybe Microsoft is right. I wonder if Google will keep 23andMe's patient data on those barges?
3. The New Yorker "Getting There from Here"
Atul Gawande runs us through the history of nationalized healthcare in other nations.....He essentially says, these systems get built upon what already exists...Great article.....leaves me with the feeling that the government wants this data and to regulate the system.....My guess, they will open up Medicare to the young and unemployed...
Why did all of this give me insight? I think I know Microsoft's new battle ground.........poaching of genetic data from 23andMe customers and holding it off shore so that the government can't use HIPAA or GINA to protect these customers......
This battle between Microsoft and Google will end up on the side of the government winning. They will not let and healthcare data escape regulation, plain and simple. Which means, if they try to move the data, the plot could be to kill 23andMe...........
The Sherpa Says: We need healthcare reform badly, but if that means an excessive amount of regulation, then we could have a problem......Doctors hate regulation.....and it looks like Google does too.....
Posted by Steve Murphy MD at 3:26 AM
Friday, January 23, 2009
Posted by Steve Murphy MD at 3:43 AM
Tuesday, January 20, 2009
1. Senator/President Elect Obama's Personalized Medicine Bill will likely pass or Congressman Kennedy's version. What does that mean?
He has proposed an interagency task force on genomics research, modernize FDA review of genomics tests and expand support to genomics researchers, including funding and creation of a new mechanism to allow researchers across the country to access and analyze genomics research. As president, Obama will continue to support advances in personalized medicine to help ensure early detection and treatment of cancer and other diseases.
This means greater regulation in the field....including DTC testing. Too bad for Rupert Murdoch but we are actually going to require evidence for testing...
2. Increased funding for Personalized Medicine in Oncology
The Obama-Biden plan will help our health care workforce grow by expanding funding for loan repayment, adequate reimbursement, grants for training curricula, the Nurse Reinvestment Act of Title VIII of the Public Health Act, and infrastructure support to improve working conditions.
3. Obama will likely be having Francis advise him.... Can only mean good things.
Friday, January 16, 2009
MD geneticists represent 0.18% of the 700,000 physicians in the U.S.
We identified only 1 RCT of a genetic testing intervention for a common condition that measured a clinical outcome -Scheuner JAMA
gizmo idolatry refers to the general implicit conviction that a more technological approach is intrinsically better than one that is less technological… Many gizmos make so much sense, in the absence of evidence or even the presence of evidence to the contrary, that their value or utility is persuasive prima facie."Leff and Finucane, "Gizmo Idolatry"
-JAMA, April 16, 2008
Wednesday, January 14, 2009
The Surgeon Generals "My Family Health Portrait" is an internet-based tool that makes it easy for you to record your family health history. The tool is easy to access on the web and simple to fill out. It assembles your information and makes a "pedigree" family tree that you can download. It is private--it doesn't keep your information. It gives you a health history that you can share with family members or send to your health care practitioner
Tuesday, January 13, 2009
Friday, January 9, 2009
I was reading this interesting post from Dr. LeWine at Harvard
Howard LeWine, M.D., is a hospitalist at Brigham and Women's Hospital in Boston, where he practices and teaches Internal Medicine. He is the Chief Medical Editor of Internet Publishing at Harvard Health Publications.
He says "Personalized medicine" sounds great. It reminds me of how we embraced the term "holistic medicine" in the past. In fact, personalized medicine and holistic medicine both embrace similar ideals―they provide advice and care based on what is medically best for each person."
That's why I call it Patient Centered Genomic Healthcare, we aim for Personal, we should really strive for patient-centered.
"The goal of personalized medicine, on the other hand, is to offer the patient and his or her doctor the tools needed to accomplish the desired outcome with minimal side effects. This means medical care needs to consist of an approach that the person feels good about, is engaged in, and is likely to follow."
I agree and I think he is hitting a point here....
Genome Scans, Genetic Testing, Family History......these are all tools to be mastered and implemented on a routine basis.....
But he then gets to the real heart of the problem, how do you keep the information in the hands of the patient?
"Personalized medicine can best be accomplished with advances in technology, such as electronic medical records that are formatted to be easily transferred between doctors, hospitals, and other health care providers. Yet, physician adoption of even this most basic technology has been really slow. Small private practices often can’t afford to implement an entirely new system of record keeping, especially when the direct benefits to the practice are somewhat intangible."
An EMR can costs 20-100,000 USD for a provider to implement. Given current reimbursement, he is right. This is a cost most physicians can't afford. Just like taking time out of your schedule to take a detailed family history and give genetic counseling for 30 minutes to an hour. Insurance code for 30 minutes of counseling pays 30-60 USD. Is that really what it is worth?
If we can't get our priorities straight, pay helathcare professionals what they are worth and GIVE Electronic Medical records to ALL providers, we may very well fail at implementation of Patient Centered Genomic Healthcare on a national scale.
Sure we have these things at Helix Health of Connecticut, but I doubt they do in my hometown of Ulster Pennsylvania!
Even with these shortcomings, Doctor LeWine suggests you as a patient take charge.
"What you can do to get personalized medical treatment
Even with the limits that I describe, you and your doctor can very much personalize your medical care. Organizing your medical information is really the first step toward personalized medicine. An increasingly popular way to have your medical information in one place is to create a Personal Health Record. Google, Microsoft, and several insurance companies offer this service for free. This is your record and cannot be viewed by anyone without your consent. You decide who has access to your medical information."
I am not so sure about dumping data into Google or Microsoft. But you could buy your own PHR. Or you could use your insurers. I just am not keen on giving this data to a company who may not have your best interests in holding your data.
Dr. LeWine suggests options for that as well...
"Even if you stay low tech, you can help your doctor provide you with ways to help personalize your treatment:
- Collect information at home that gives your doctor the most complete picture of your condition. For example, if you have new symptoms, keep a diary for a few days or weeks that indicates when the symptoms occur, how long they last, and anything you were doing before the symptoms started.
- Ask your doctor what are the specific goals that he or she would ideally like you to achieve. For example, if you have high blood pressure and you monitor your blood pressure at home, what average blood pressure is optimal for you?
- Ask your doctor for an action plan. For example, what blood pressure readings (high and low) should prompt a call to the doctor’s office?
- Review your medications with your doctor at each visit, especially if you notice any side effects.
He Misses One Key Point. Take your Family's History. Keep it in a safe place and update it regularly
This is a spot on prescription for starting to begin to achieve patient centeredness, which is the first step in living a healthy life in the 21st Century.
The Sherpa Says: These steps are akin to doing an equipment check PRIOR to ascending the mountain! Don't forget your crampons!!!
Posted by Steve Murphy MD at 1:03 AM
Wednesday, January 7, 2009
Monday, January 5, 2009
6. Useful Medical Applications Using Windows Mobile
Posted by Steve Murphy MD at 1:55 AM
Friday, January 2, 2009
So I have no idea where to begin. Which is why I will just start with the Stats.......
- Only 17% of patients with familial colon cancer risk were referred to appropriate genetic counseling according to a study at Harvard.
- Prenatal counseling is not offered 9 of 10 women who meet indications!
- Only 37% of MDs know that BRCA genes can be passed by the father!
We have a lot to cover and I look forward to sharing my solution to this huge problem. How in the world can we expect to implement Personalized Medicine in all its glory without having some Genome Savvy physicians? Oh....Those geneticists? Too bad almost 90 percent are pediatricians and have no clue what ischemic heart failure is. (Or Plavix)