Mixed feelings

[EJTampa]

I'll try to keep this post neutral.  Have you ever wondered why there are so few entries in the Physicians List here on the ANA site?  Well, it appears it is at least in part due to the ethics of some doctors.  I'll explain.
 
When we, as patients, come to a site like this to get information on our new found ailment, we are genuinely scared, but worse yet, ignorant.  Disregarding sponsered links, a quick search for acoustic neuroma results in anausa.org as the top choice!  This is the FIRST place I came, even before the "official" diagnosis.  I made new friends in just a few days, and honestly was put more at ease by all the wonderful supportive people that spend hours of their time here just to make me, and others like me, feel less alone.
 
I can't say enough good things about this site.  Many of the benefits here are free, and those that have a cost associated with them are generally covered by a small donation.  I know I quickly added ANAUSA to my list of donation recipients when I found this gold mine of information.
 
But it is with some hesitation, and a bit of frustration, that I feel I must voice my one (and only one so far) complaint about the ANAUSA.  Excellent physicians are invited to appear on the physicians list here via email from the president and associated support staff.  The physician need only do two things.  1)  Fill out an attached questionnaire to highlight training and experience, and 2)  Pay an annual fee of $325.00 per physician, or a "center of excellence" is $1100 for 4 physicians
 
When I first heard this, I didn't think much of it.  What's $325 bucks to a surgeon?  But then it was explained to me by my surgeon.  As a matter of ethics, one does NOT pay to have their name put on a list of "recommended" physicians.  Imagine if this became common practice, and only physicians willing to pay an annual fee were listed on any given web site?  I honestly do see his point.  Obviously, we should all do our own research on a physician regardless of what list we found him or her from, but you can see how a physician could make the list just by paying a fee and perhaps padding some numbers a bit.
 
This quote is from the ANA physician page:
 
The physicians or organizations listed have self-reported data to meet criteria established by the ANA for having substantial experience in treating acoustic neuromas. The physicians have paid an administrative fee to be listed, and the listings should NOT in any way be construed as an endorsement or recommendation by the ANA.
 
So I am not suggesting that the ANA is doing anything wrong.  Again, I have so much wonderful stuff to say about them!  But I do wish they would list Physicians based on 1) Physicians "brag sheet", 2) Forum members recommendations, and 3) Facts on number of AN surgeries performed to date. 
 
If anyone from the ANA is reading this, please consider changing the rules for the physicians list.  Many very good and reputable physicians will shy away from fee based listings due to ethics.  A more complete list of verified and forum user approved physicians would be something I would pay for as a visitor looking for information, so the ANA should still be able to keep revenues coming in.  Isn't the purpose of the ANA and this web site to provide us, the users of the site, with as much information as possible to make an informed decision?
 
Ok, I'm done with my rant.  I hope I made it clear that I am still very much in support of this site and the ANA as a whole!
 
Ernie in Tampa

[ppearl214]

Hey Ernie,

Thanks for sharing this. I am not sure if this is the proper location to note such things and would like to know if you have taken these comments directly to the ANA so they can  provide their input?  The ANA office does not post here unless it pertains to a site-issue. 

Also, from the forum home page, using the "Search" option at the top of the page for a particular patient-post for a particular doc can be done. Many doc names are noted throughout the forums and have not been centralized to the "Physician" forum..... so that may be an option as well.

My suggestion is to note this directly to the ANA office (they are VERY open to all comments and usually quick for response) and would like their take on this concern to keep the balance of discussion.

Thanks.
Phyl

[leapyrtwins]

Ernie -

I'm with Phyl on this, you should voice your concerns to the ANA, but let me give you my take on this.

The ANA is a non-profit organization and it is a very small organization.  They provide excellent support to patients and the majority of it is without compensation attached.  Prime example, this forum doesn't require any fee to participate, nor does it even require that forumites become members of the ANA.  In fact, I'll bet that currently less than half of those who participate on this forum aren't paying members.  That said, how does the ANA manage to stay afloat?

Being the controller of a non-profit nursing organization (many, many times larger than the ANA) I can tell you our biggest forms of revenue are member dues, meeting registrations, and advertising.  I'd imagine the ANA is much the same as my employer, but their dues are minimal, their meetings are either free or have a small registration fee (example the biannual symposium), and they take advertising dollars from doctors.  I see nothing wrong with this.  And the ANA is very upfront in noting that they aren't endorsing doctors and that they are taking advertising fees.  I've often pointed this fact out to forumites that I've referred to the physician list.  So basically, no one is misleading anyone here.

I also don't feel that it's unethical for doctors to advertise - lawyers either, for that matter.  Doctors are in business and they have bills to pay just like the rest of us.  They do what they do for many reasons, but I don't think going broke is one them - nor would I expect it to be.  They offer a service - and they've been through numerous years of schooling to be able to offer that service - and IMO they should get paid for it.  It would be great if all doctors worked for free, but it's highly unrealistic.

Although my doctor's practice is listed on the ANA's site, I had no idea it was until I found this site - after my surgery had already taken place.  I was referred to my doc through my ENT.  However, I have no problem with my doctor and his practice being listed on the ANA site.  In fact, I'm proud that he and his partner thought enough to get their names out there to help other AN patients find them.   

I have contributed to the ANA since the first time I paid my dues.  I also regularly donate and am very proud to be one of the sponsors of the 2009 Symposium this year.  I hope to be financially stable enough in the coming years to continue this practice.  Donating to this very worthwhile cause is what will keep it alive and growing and I encourage everyone who can to follow my lead.

Jan

[Pooter]

I have to chime in also.  EJ brings up an interesting point; a conundrum of sorts..

The ANA can't stay afloat without (in part) doctor's dues to be listed by the ANA, and the doctors won't pay a fee to be listed because of the APPEARANCE of an ethical problem. 

One one hand, I can see the problem of the doctor's because I certainly don't want to see a list of doctors who are quasi-approved by the ANA when all they need to do is pay $325 bucks to be listed.  I want a truly undiased, real-world list of doctors who are genuinely good at what they do; that's more helpful to me (or would have been).  On the other hand, I can see the ANA's point of view that why ask the members to add salt to the injury by forcing dues at a time when they least need to worry about dues in order to get information.

I, too, am a member of the ANA (it took me awhile, even though I came here and contributed before being a member).  It would stand to reason that the only way to keep both sides happy while also making the members happy about having said list would be that the ANA Members foot more of the bill.  Perhaps, charge each local chapter a certain dollar figure.  They can either raise it thru fund raising activities, standing on the corner begging, or the leaders of the chapter can just foot the "bill".

It seems to me that charging the doctors for listing them won't work in large part due to ethical concerns.  Rightly so.  But, the ANA needs to come up with another way to raise the money to stay afloat.  I think this is an important community doing wonderful work for AN patients and it should not go ignored.

Okay, I'll parachute off my soapbox now... WEEEEEEE!!! 

Brian

[EJTampa]

I knew I would get responses on both sides of the fence, since, even I have trouble sorting it out.  As far as going directly to the ANA, I may do that.  But I think it is important that visitors understand that only doctors willing to pay a fee to be listed will be found here.  Despite the fact that there is a disclaimer stating that the listing should NOT in any way be construed as an endorsement or recommendation by the ANA, I think many of us, including myself, do in fact believe that those physicians are members of an exclusive group, being the "cream of the crop" so to speak. 
 
I'm not trying to stir up trouble, and I hope I have not made anyone angry, but visitors need to know that many good doctors will not pay a fee to be listed, and will be found only by searching the forums and asking for recommendations from others.  You are all wonderful people, and I wouldn't trade you for a sack of gold (well, maybe a really big sack  ).
 
You see, after meeting with my physician, I am now finally very comfortable about my decision.  Much of my discomfort stemmed from the fact that he wasn't on "the list".  I finally mustered up enough courage to ask him what he thought the reason was for not being listed.  That's when I learned of the fee, and how it causes a struggle over ethics.  To pay and be listed would certainly be good for business, and bring more patients from nearby states. But at what cost?  I'm not talking about the money.
 
Anyway.  This thread is here now, and I don't wish to upset people at all.  My goal was two-fold.  1)  To voice a concern to other patients who may find their way here, that they understand that very good doctors may not be on the list due to reasons that have nothing to do with their abilities.  And 2)  That perhaps an officer of the ANA would see this post in the forums, and understand my concerns, which are likely shared by others.
 
I agree that the ANA needs to raise funds to continue, and that they provide an absolutely wonderful service to us AN'ers.  I also think that if they made the listing free, but asked for a donation at the same time, they would still likely bring in some money.  That would certainly eliminate the ethical issues, since doctors would be listed whether or not they donated money or became members of the ANA.
 
I think my soapbox is a little taller than Brians, I hope my parachute opens!
 
Ernie

[leapyrtwins]

EJ brings up an interesting point; a conundrum of sorts..

Brian - I think Jim Scott is rubbing off on you.  You've used the word conundrum twice this week 

Ernie -

I took no offense at your post and didn't see it as you stirring up trouble at all.  I think your concerns are legitimate and they needed to be pointed out.  That said, I didn't have any of these concerns - still don't - and I felt it was important to point that out.  As is quite evident on this forum, we all have differing opinions.  That's what makes it the great place it is.

Being a doctor, I'd love to see Sam Rush weigh in on the ethics of advertising from his perspective.  Are you out there, Dr. Sam?

Jan

[Pooter]

EJ brings up an interesting point; a conundrum of sorts..

Brian - I think Jim Scott is rubbing off on you.  You've used the word conundrum twice this week 

[...]
Jan

Hey, I paid good money to use that word and I'm gonna get every last penny of use out of it!  Heh, I could be witty and say it was a by-product of my brilliant surgeon's work. 

Brian

[lori67]

Ernie,

I'm really glad you brought this up, because I've often wondered why some of the doctors we hear of on the forum are not on the physician's list on the website.

On this very rare instance, I will have to disagree with Jan  (sorry).  I think the ANA should be able to list all physicians who are qualified.  It should have nothing to do with money changing hands.  It doesn't cost anything to add a name to a list, and there's no reason a doctor can't make a donation separately and get his/her name mentioned in the newsletter if he wants some advertising.

I agree that everyone needs to earn a living and the ANA needs funds to continue, but it does give the mistaken impression that if your chosen doctor is not on that list, then maybe he's not that good.  I know there is a disclaimer on the site, but I think it's safe to say that most people would get the impression that the ones listed on there are the best of the best.  Any surgeon with an extra $300 bucks could be listed on there - even if he's the biggest quack out there.

I personally prefer a doctor (or a lawyer) who does not need to pay to advertise, but builds a solid reputation based on quality of care (or litigation, as the case may be).    And I can certainly understand why some truly brilliant surgeons are reluctant to be on the list.

I'd be interested to hear what the feelings and thoughts are from the ANA directly.  I'm sure they have their reasons for the way they do things.

And don't worry - if your parachute doesn't open,  I'll try to catch you.  But if you yell into my right ear, I won't hear you.   

Lori

[leapyrtwins]

OMG!!  Lori is disagreeing with me - gasp    Now there's a first    Guess it's time to put her in that Forum jail you mentioned in another thread, Pooter    LOL

Honestly, thanks for the opinion Lori; good to see another perspective.  I hope we get input from at least a few other forumites before this topic dies.

The idea about docs donating is a good one - I'm sure they could use the tax deduction as much, if not more, than us "little" people.

I believe the ANA monitors this forum - even beyond Phyl, Jim and Steve - and it would  be interesting to get some "official" thoughts on this topic.  Perhaps someone with authority will weigh in.

Jan

[ppearl214]

Hi all,

The ANA is aware of this thread/discussion and welcomes all inquiries about this issue. You can contact the ANA directly (email, phone) to discuss this.

Thanks.
Phyl

[sgerrard]

I guess I see it as a combination of two things: the ANA can't endorse any doctors, for all the usual legal reasons, and it seems reasonable to me to ask the doctors to support the ANA, as it doesn't have much funding. Trying to marshal the wide array of patient opinions on doctors into some sort of rating would be difficult and ultimately fruitless. I think a new patient is better off going to the Physicians section of the forum and seeing all the details of what people have to say. The list is one more starting point for a patient, not the final word.

Steve

[Dog Lover]

For what it's worth, when i was first diagnosed and looked at the Physician's List one of the first things I noticed was that it was small (only 8 states listed). As soon as I saw this on the page:

...The physicians have paid an administrative fee to be listed, and the listings should NOT in any way be construed as an endorsement or recommendation by the ANA. It is every individual's responsibility to verify the qualifications, education and experience of any healthcare professional

It lost it's importance to me. Obviously if a doctor was not willing to pay the fee he/she wouldn't be listed. Seems like more of an advertising page than a referal page to me. JMHO.

Cathy

[EJTampa]

I guess I see it as a combination of two things: the ANA can't endorse any doctors, for all the usual legal reasons, and it seems reasonable to me to ask the doctors to support the ANA, as it doesn't have much funding. Trying to marshal the wide array of patient opinions on doctors into some sort of rating would be difficult and ultimately fruitless. I think a new patient is better off going to the Physicians section of the forum and seeing all the details of what people have to say. The list is one more starting point for a patient, not the final word.

Steve

I certainly agree that it would be next to impossible to develop a rating system based on patient opinions in the forums, but  I think Cathy hit the nail on the head in much fewer words than I usually use when she said that the list lost importance to her when she read the part about paying a fee to be listed.  I'm the type of person that skips over the mumbo-jumbo (yes, my fault) and goes right for the main course, so I only see (saw) a list of doctors that I assumed (bad on me again) were above and beyond the rest of them out there.
 
I have to remind myself that the ANA is
...Patient Founded
...Patient Funded
...Patient Focused
 
So I bet the officers struggle with the ethics/money issue as much as I do .
 
I found this on the site as well...
 
Core Values

Professionalism: to maintain high ethical standards at all times

Objectivity: to remain free of bias in everything we do

Research: to constantly learn more about acoustic neuromas

Communication: to engourage dialog and disseminate information about acoustic neuromas

Innovation: to stay current with technology and emerging, diverse, pre- and post-treatment options

Respect: to honor the needs and privacy of acoustic neuroma patients
 
I'm still not so sure that requiring physicians to pay to be listed is ethical.  Perhaps if they would simply change it from "Medical Resources -->Physician List" to "Physician Supporters Advertisements" it wouldn't look so much like a referal list.
 
P.S. -  I got an email from the surgery scheduler person and I believe I will have a date to put on the calendar soon!
 
Ernie

[leapyrtwins]

Ernie -

congratulations on almost having a date 

Great points, Steve.

Jan

[JulieE]

I remember being "dismayed" that there wasn't more on the specific doctors I was considering, or the area I was in.  The implication was that I would need to go elsewhere to find an experienced team.  I made my own decision 99% gut, and 1% forum.  I had a stellar team here in Austin, resulting in virtually no complications.  What I did find was, in the aftermath of surgery, this support group gave me 99.9% assurance that I was on a similar track for recovery; and validation that, although having a brain tumor was woeful, I was going to be OK, and I was normal in my emotions about it.  That left me with a miniscule annoyance I didn't get what I initially came for (having someone take my hand and show me the right doctor and guarantee my outcome - impossible anyway!).  I did my best to rectify this for future patients in Central Texas by putting in the doctors names and location, which could be then be found using the search engine, and they would at least have access to my experience to aid them in their decision making process.
Although I understand the concern you raise, I feel this site is superior to others of its kind for any illness.  Viva la AN patient, and Viva la ANA.
Jules