Friday, October 3, 2008

Long overdue, Gene Sherpas quoted twice in journal!

After a week from hell I am back. I am sad that I missed a week's worth of cancer genetics patients, but they wouldn't have found me very useful at the time!

As I recover, I wanted to point you in the direction of 2 articles which quote This lovely blog, Gene Sherpas! Yes that's right, peer reviewed journal articles quoting the
Sherpa....ok, well one was an article I wrote, so I guess that doesn't count! But Li Hui Xu at the great Ohio State University College of Medicine's Center for Personalized Healthcare quotes me....I have to tell ya, I was flattered!

"Steven Murphy, the blogger of the Gene Sherpa and Clinical Genetics fellow at Yale University (CT,USA) advises institutions to abandon the 'prize' for publication, which is so highly valued in academia, but prevents the early exchange of information and resources. Instead, Murphy says, institutions needs to nurture inter-institutional collaboration "In fact, I would say we should prize how many universities were involved in every study!""

Wow! Thank you for reading this blog. I am honored to have it quoted in a peer reviewed journal such as Personalized Medicine! I know the weekend is coming up.

But I will be working on a presentation I am going to give at the NSGC. The topic, where do genetic counselors fit in personalized healthcare. Here's a sneak peek.

1.
Genetic counselors: are trained in genetic counseling and have 2 years post-baccaluareate training. They take their certification exam once without needing to recertify like MDs! They do have one or 2 courses in clinical medicine where they "discuss medicine in a workshop format" They do take family and medical histories though. I have even seen a few try to do physical exams, even though they were never formally instructed in this. They do require Continuing education though, which is very nice. All in all that is less than 1 year of clinical training prior to running their own genetic counseling division under the loose supervision of a doctor or doing SNP scan counseling. They do have to have 50 cases though.....Number? Approximately 2000 or so.

2.
Nurse practitioners: are trained in clinical nursing and have had 2 years of post baccalaureate training. But first had attained 4 year degrees in a clinical setting (i.e. dosing medications, caring for patients). In addition, they too have a certification exam which they do not need to recertify. But in addition, require continuing education. Plus did I mention that they also did 4 years of clinical training PRIOR to their master's degree? NPs conduct physical exams, diagnose and treat illnesses, order and interpret tests, counsel on preventive health care, assist in surgery, and write prescriptions too.

All in all that is 4-6 years of clinical training prior to being under the supervision of a doctor. A little more than 50 cases I imagine. Number 120,000

3. Physicians' Assistants: are trained in a 4 year bachelors degree and then go on to 2 years of intense basic medical science and clinical training. When they are done PAs conduct physical exams, diagnose and treat illnesses, order and interpret tests, counsel on preventive health care, assist in surgery, and write prescriptions. They also are required to recertify every 6 years and take CMEs too. Most PA programs even require some sort of healthcare experience prior to going to PA school.


All in all that is 2 years of clinical training prior to being under the supervision of a doctor. Still more than 50 cases......Number? 43,000 or so 4.

Medical Geneticist: Take 4 years of bachelors, often in basic medical science. Then go on to 4 years of medical school. Then they go on to 3 years (at least) of medical residency where the diagnose, treat, dose medications, perform physical exams, take calls.
AND THEN they go on to 2 more years of training in fellowship, diagnosing and treating genetic medical disease, doing research, taking calls. All in all that is 9 years of clinical training under their belts prior to being on their own. Plus they have 150 cases and that pesky 9 years of training.

Number? 700 or so.

Why do I mention this? Because the public needs to know what they are getting with each type of consultation.

And I do this to make the point that Certified Genetic Counselors will struggle to find their place in the new fields of Genomic Medicine, unless they go back and truly train in clinical medicine.

The genomic nurse's are clamoring to take your positions. Well maybe not, but alot of CGCs don't even speak the clinical language very well. In order to take accurate medical and family histories, they need to know the genetic implications of sudden death, stroke, heart attack, coumadin metabolism, protonix efficacy, alzheimer's disease, COPD, I could go on and on.

But if they never saw it and talked about it, how could we ever ask them to learn this stuff through Osmosis or "Clinical Workshop"????? They can learn it by working with doctors....

To be a part of the team in Genomic Medicine, a counselor needs to decide, do I want to be a licensed healthcare practitioner? Or an educator/counselor? If the answer is the former, I humbly suggest 2 years of clinical education maybe by apprenticeship. If the answer is the latter, I would not give medical advice/education without having it ok'd by my supervising physician. Because if you were scratching my signature on that insurance form, I would be damn sure you were giving proper medical advice.

Warning This is an Extreme example!

Not all counselors are like this one. Just the overconfident ones are!

Why do I say this? Because, I have seen CGCs tell patients that if they have their ovaries out prior to menopause that it is ok to take hormone replacement therapy.

But NEVER, EVER tell them the risks of HRT, including stroke!!!!

In fact, I saw a CGC take a family history loaded with stroke, yet tell the patient straight faced she could go on HRT.

When I questioned her where she heard that, she said: "Well, or lead counselor has some papers on it." I told her that I was taught, WHI was stopped b/c the Estrogen Alone Arm increased risk for stroke compared to placebo....she said, well I have a compilation I can give you.

What she pulled out was representative of her knowledge base. It was 4 sheets of paper explaining how HRT in premenopausal BRCA carriers don't have increased risk of getting breast cancer......There was nothing about stroke in it at all.

This is the type of thing that doesn't surprise me. Did a CGC ever learn about stroke? NO. Did they ever learn about sticky platelets in the face of estrogen? NO. Did they ever learn about platelet glycoprotein receptors? Likely Not? So why would I expect them to counsel on the risk of HRT?

They don't speak the language.

This is precisely why they need to be collaborating with physicians while delivering medical counseling. But that's not what's happening.

Ask any Cancer counselor and they will tell you about the tremendous amount of insurance fraud that is going on...if they dare....

But I am here to tell you about the tremendous amount of significant medical misinformation that is being conveyed to the detriment of the patient. It is sad and must stop. No offense to my excellent CGC colleagues who recognize their limitations.

But to the rest of you, stop practicing medicine without the medical clinicians. Demand that they work with you.

So to answer the question, where do CGCs fit in? As the informer of disease risk for diseases they are trained to understand and know, and not to give medical/medicinal advice unsupervised.

That being said, you can learn about a field you weren't trained in, but you should stick with the doctor, or physician approved guidance.

Some counselors will learn more than others, but they still should have physician supervision........If you want to do more......go back to school.........

The Sherpa Says: These are harsh words. I think CGCs are fantastic as a whole. But we have to be realistic, we could do much better training just 3 percent of the NPs or 5 percent of the PAs and be able to carry out Genomic Medicine efficiently. It would take 100 percent of CGCs to go back to school for 2 years to carry this out. It is just not reasonable to expect them to do that......plain and simple. To all my CGC friends, I still love you. I hope you aren't pissed at me. If you are, then send me an email. I am sure this will make the SIG.

16 comments:

Anonymous said...

Yes, a CGC should have a year (or two) of clinical training.

When I was shadowing a GC a couple of years ago, the doctor asked the GC if she had any thoughts for what genetic condition the patient may have. The GC said: "I don't have any idea." Some GC's will continue to learn at a much deeper level than other GC's.

You couldn't have said it any better: "They don't even speak the clinical language very well. In order to take accurate medical and family histories, they need to know the genetic implications of sudden death, stroke, heart attack, coumadin metabolism, protonix efficacy, alzheimer's disease, COPD, I coudl go on and on. But if they never saw it and talked about it, how could we ever ask them to learn this stuff through Osmosis or "Clinical Workshop"?????"

The way a CGC is trained needs to be adjusted.

Andrew said...

2 problems, Steve:

1) More schooling means more expense and, in the short term, less capacity. The existing genetic health care system already resorts to fraud to keep afloat. Requiring more schooling means that these programs will have to be "refactored," or more likely, be crushed by a competitor operating at a lower market point that scales better.

2) Genomics is changing faster than traditional medical education can. In 9 years of clinical training that ended today (2008), Google will launch, the human genome project will conclude, DTC genomics will launch, the launch and end of the French SCID clinical trial ... and this rate will only accelerate. Yet, despite years of this education, doctors don't even know basic bayesian math, according to well-published studies.

So: How will all this additional traditional medical education equip doctors to understand a accelerating, technologically exciting field, and who's going to pay to learn how it will (or how it won't)?

Anonymous said...

Andrew,

Have you thought about developing a career in the field of genetics?

Steve Murphy MD said...

@ Andrew
More schooling means more expense and, in the short term, less capacity. The existing genetic health care system already resorts to fraud to keep afloat. Requiring more schooling means that these programs will have to be "refactored," or more likely, be crushed by a competitor operating at a lower market point that scales better.


Ok, Drew......No one's getting crushed.....especially in healthcare. It is the most resistant field out there. More schooling for 100% of CGCs will never happen. Now 10% of NPs that could happen. Either way, unless you can build an algorithm that covers it all......we will need these professionals to do genomic medicine. I tried that whole voice recognized decision guided tool once......Crash and Burn my friend.

@ Drew
How will all this additional traditional medical education equip doctors to understand a accelerating, technologically exciting field, and who's going to pay to learn how it will (or how it won't)?

Who said it will be traditional education Drew. I am a big fan of the apprenticeship. Bayes is just a part of the whole statistical puzzle. Which will likely be solved by computers....no doubt. But the consultation and physical exam.......not for another 30 years my friend....

As for who's gonna pay? I would say, Pharma, Labs, and the government....

-Steve

Anonymous said...

Hello Dr. Murphy,

This is N/A. Here is a link I would like to share with you: http://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm

"Welcome to the Genetics Education Program for Nurses (GEPN) at Cincinnati Children's Hospital Medical Center. The GEPN offers genetics educational opportunities and resources for nurses"

Steve Murphy MD said...

@ anonynmous,
I will be posting about your lovely program shortly! This is what we need! Nurses who can take family histories and counsel! Fan-freakin-tastic!!!!

-Steve

Anonymous said...

"I will be posting about your lovely program shortly! This is what we need! Nurses who can take family histories and counsel! Fan-freakin-tastic!!!!"

It isn't my program, lol. Anyways, I was just searching for genetics distance education opportunities and I came across this one. I'm not a nurse though (sad face).

Anonymous said...

I am a CGC and I appreciate your honest and well-articulated comments on our limited clinical training. CGCs have some important skills that most physicians do not. Our professional organization (www.nsgc.org) defines our scope of practice very nicely, recognizing these limitations. However, CGCs are not licensed providers in most states, nor are we recognized as allied providers by CMS. This means that our scope of practice is not regulated or even on the radar of a regulatory body. So, what happens in practice is that the role of the CGC in a given case is determined by the physician s/he works with (usually medical geneticists). The physician is in the position of being the CGC's boss, the lines are muddied, and the role of the CGC is at the whim of the MD. This is a terrible position for the only workforce that right now DOES have the genetics knowledge to provide to patients in the age of genomic medicine. Our scope of practice needs to be better embraced by the health care system, with our role being one of providing risk assessment, genetic testing options and educators of patients and providers. Most CGCs feel very uncomfortable discussing management, but are put in that position by geneticists who frankly rarely manage patient themselves.

Anonymous said...

Gosh, I find it awful ironic that you BASH genetic counselors so harshly on your blog, yet have them listed on your “Helix Health of Connecticut” website in the very first sentence about the healthcare team. Do you really think that your silly attempt at an apology to your “excellent CGC colleagues” will be sufficient? And gee, while we’re talking about “clinical ineptness”, I thought I should also throw out the fact that you specifically list services such as “preconception genetic evaluation” but I see no one on your team with an obstetrics background. I guess having someone with that type of “clinical training” wouldn’t be necessary since you’re just helping a couple plan for a PREGNANCY.

Luckily, it seems as though the only patients that are going to be able to seek your great “expertise” are the few economically elite. For the rest of the population, we’re going to have to settle for consultations with all those well-educated, compassionate, hard-working genetic counselors out there.

Anonymous

Andrew said...

"Andrew,
Have you thought about developing a career in the field of genetics?"

The thought has crossed my mind, yes. What do you suggest?

Allie said...

As a GC, I think you make some good points, but others concern me. I have shared some of my thoughts here.

Anonymous said...

As a genetic counselor, my job is to inform patients of their option regarding medical management. I work at a breast cancer center and counselor patients before and after testing for BRCA1/2. I always mention that medications like Tamoxifen are OPTIONS for patients but refer them to an oncologist, OB/GYN, etc to discuss the risks, benefits, etc, in more detail. I do mention that there are risks with this medication -- however, as I am NOT the prescribing physician, it is not my job to go through every possible side effect/risk of these medications. That is the PHYSICIAN's job/responsibility.

Steve Murphy MD said...

@anonymous....

"as I am NOT the prescribing physician, it is not my job to go through every possible side effect/risk of these medications. That is the PHYSICIAN's job/responsibility."

Agreed, the prescribing physicians needs to counsel on risks and benefits. But it sure is awfully tough when a patient has been "convinced" by a counselor that the medication is "ok as an option"

Patients often are confused when they get information which is not the same as what physicians are taught. I have seen this happen with hormone replacement therapy....I am certain it would be the same if you were to counsel medications like beta blockers...

I think that cancer genetics is a great field. I just worry the patient may have multiple questions, which only a doctor can advise on....If you aren't working directly with an MD.....the patient is likely to miss out on that counseling.....

If you are billing for a 99245, the physician SHOULD be seeing the patients with you.....

-Steve

Anonymous said...

Dr. Murphy,

I have a few random thoughts; You seem to have some very strong negative opinions about genetic counselors. In fact, you seem to be very angry. Why do they anger you so? Is it that you feel they are overstepping their bounds (or on your toes)?

You are aware, are you not, that GCs pass the same general cerfiying exam that you do; actually the GCs have a higher rate of passing the exam than do the MDs and PhDs. They also do lengthy, rigorous clinical internships (some of my training was with Francis Collins; You've heard of him? You know, the one whos lab found the genes for CF and Huntington disease, among others, head of the Human Genome Project) and on-the-job training during the early years of their career where they learn to "speak the clinical language very well" and understand the "genetic implications of" a family history of "sudden death, stroke, heart attack..." the sorts of things that are unfortunately so often missed by the primary care doctor.

How many CGCs have you worked with? How many years of experience did/do they have? Were they certified? I suspect that the answers to these questions are "not many", "very few" and "no".

A GC's role is not to do PEs, prescribe meds or provide medical management. As was said earlier, this is the managing physicians role. A GC's role is to provide genetic counseling, which can not be accurately provided by over 99.9% of MDs in this country, most of whom have received no genetics training beyond Biology 101. Most oncologists can not accurately interpret the meaning of genetic test results and their implications (yes, there are published studies).

And I have heard many an MD geneticist say ""I don't have any idea." as to the diagnosis, which would be expected in the case of a very rare genetic syndrome. Have you ever used OMIM? Better to admit not knowing than barging ahead with the diagnosis of first impression.

I remember during my first years in ped genetics seeing a baby at the phlebotomy station, who did not have an appointment for a full evaluation, having blood drawn to "rule out Down syndrome" per the referring pediatrician. I was able, with my "inadequate clinical training" to discern that the baby had severe craniosynostosis (something I learned about through "osmosis", as you call it), which, as you should know, can be seriously disfiguring if not lethal. The nurse, who had worked in genetics for years, had not thought to call in the geneticist to take a look. I dragged him in for an on-the-fly consult and immediate imaging and surgical conslutation.

You need to spend time tailing some of the excellent, experienced CGCs out there- it should be an eye-opening exercise.

As with any profession, there are great and their are poor practitioners. You seem to have missed out on seeing some good ones in action.

Did you know that many patients will tell the GC critical info that they did not share with you, or any other doctor? We spend enough time with the patient to be able to establish a raport and trust making them comfortable sharing "embarassing" or "shameful" info. That Muslim patient of yours may not tell you about her breast lump because you are male.

Doc, you are still in the infancy of your genetics career. You have a lot to learn, maybe some of it from a GC?

Proud, hardworking GC said...

Hi Dr. Murphy,
I was very disapppointed by your comments.
You seem to believe that many genetic counselors try to be doctors or think that they have the training to provide medical management. No genetic couselors that I know have those beliefs. Only a fool would think that 2 years of graduate school qualifies a genetic counselor to medically manage a patient. That is NOT OUR JOB. THAT IS NOT OUR JOB. THAT IS NOT OUR JOB.

If you don't think that genetic counselors have a role in a practice such as yours, don't hire them.....but we do and will have a role in genomic healthcare as it expands.

It remains to be seen how our role will evolve. GCs and GC training programs have adapted over time to changing technologies, and will continue to adapt.

Your comments read as though you think the whole field of genetic counseling should be abolished because we aren't trained to do clincial exams. Your sarcastic comments also read as though you think our graduate degrees, certification and continuing education are worthless.

If you don't value the depth of our roles in healthcare that's your poor call. Good luck trying to convice the world that we are an obselete field (which seems to be what you think). We are an adaptable field in high demand, and are valued by countless MDs around the world.

Steve Murphy MD said...

@ Hardworking GC
"I was very disapppointed by your comments. You seem to believe that many genetic counselors try to be doctors or think that they have the training to provide medical management."

I am sorry that my opinion disappointed you. I have an N of 25, not exactly 2500, but a significant group.

"Only a fool would think that 2 years of graduate school qualifies a genetic counselor to medically manage a patient."

Is medical advice management? I wonder....maybe not, but maybe it is....

"If you don't think that genetic counselors have a role in a practice such as yours, don't hire them.....but we do and will have a role in genomic healthcare as it expands."

I agree with you. But I think if CGCs are left alone without supervision, it could get dicey....PGx is not exactly like cancer genetics. You would have to explain Pharmacokinetics and Dynamics....I think you would need a course or 2 on Pharmacology

"Your comments read as though you think the whole field of genetic counseling should be abolished because we aren't trained to do clincial exams. Your sarcastic comments also read as though you think our graduate degrees, certification and continuing education are worthless"

I am sorry you feel that way. Your Master's Degree is not worthless at all. It is very valuable. And tremendously useful. But like 23andMe getting confused with genetic medicine, some people can confuse counselors with doctors.....I have even seen counselors not correct the patient and let them go ahead and think that the CGC is a doctor....shady business there.....Which doesn't happen when a doctor sees the patient in conjunction with you....

I just want to make sure that the patient understands that they are seeing a counselor. Which is why I am against billing 99245 for counselor only visits (Other than the fact it is illegal in several states)

"If you don't value the depth of our roles in healthcare that's your poor call."

I do value your depth, I just doubt your breadth....That's all, huge difference. But you do provide value, no one is arguing against that!

"Good luck trying to convice the world that we are an obselete field (which seems to be what you think)."

You are not obsolete! Just not the right tool for the job. I don't think you should take that so hard. Just look at your training and experience here to fore....Do you feel comfortable working with medications? Do you feel comfortable explaining heart disease? Multiple Sclerosis? Alzheimers? Stroke? INRs? HIV R5? CXCR4? EKGs?

A lot of PAs and NPs feel very comfortable with this...

You could adapt, but you still are missing
1. A license
2. hearty clinical science training
3. Pharmacology education
4. Clinical exam ability
5. I would go on but think you get my point.

CGCs are very important, but they are not the solution in this space. I am sorry, but that is my opinion.

-Steve