Checking out qualifications CK center/physicians

[Anomar11]

Hi All,
Did anyone ask about contacting a center's former patients?  When I asked this of St. Paul's center, they stated this just wasn't done.  Should that make me suspicious?  I know privacy regs, HIPPA and the like mandate full consent which would have to be given, but you'd think many former pts. would volunteer to help others.  Of course, the facility may only lead  to those with positive outcomes.   They seem to be the facility open the longest that is relatively near to me - open 4 yrs.  They state they have treated approx. 40 AN's and over 200 intracranial tumors/malformations.  Other than asking pointed questions about their stats, is there any other way to check out centers or physicians?
Thanks.
Mona

[ppearl214]

I definately asked for references and they were noted to me, although not many since the BI CK center was fairly new at that time (at that point, they had only done a few AN's).

I am now a patient-to-patient reference for BI and they have given out my name on numerous occassions and they have no issue giving out patient references. They also noted to me to be as honest as possible (the good, bad and fugly), which is what I do.

I'm not sure who you spoke to there, but if you haven't tried the actual radio-oncologist, ask them for the references. Typically, they have no issue giving them out. If they do, ask why.

To answer your question about checking out the physicians (and centers), you can contact your State Board of Registration (you can find it online) and you should be able to do a physician search, which should clearly note their credentials, any malpractice, awards, publications, etc on them. The State Board should also be able to provide you with the Accreditations of the facility.

Hope that helps.
Phyl

Phyl

[Anomar11]

Phyl,
Thanks so much.  Your advice did help.  Seems like I'm off on another tangent.  Just posted about it under AN Issues.  I will get a few more opinions.  I'm getting more in the hussle mode now. Just keep telling myself "things happen for a reason".  Take care.
Mona

[Tumbleweed]

Mona, I will add to Phyl's excellent advice with this simple tip: the places that have done the most CKs (which I know is the treatment you're considering having) for ANs obviously have the most experience, which usually equates to the best outcomes. And there's a reason why they've done the most CKs -- people have heard of their reputation and seek them out for treatment. So as a simple yardstick, find a facility and doctor(s) who have done the most CKs in your region (or out of your area if you're willing to travel). Chances are they are the standard bearers.

One of the reasons why I chose Stanford for my CK treatments is that they have treated around 700 ANs; 125 in 2007 alone. Practice makes perfect. And they (specifically their Dr. Adler) invented CK. Many doctors from around the US got there CK training at Stanford. How much better can you get than that?

Best wishes,
Tumbleweed

[ppearl214]

Many doctors from around the US got there CK training at Stanford. How much better can you get than that?

Glad to help Mona and Tumbleweed. To elaborate on Tumbleweed's notation quoted here, know that the CK centers all train with Stanford and all get together (I believe, quarterly) for meetings to discuss new protocols, case studies (I signed up for the BI CK case study program and actually found out through another CK doc that I am now a *coff* Powerpoint presentation!  ), etc.  To me, for the CK docs to get together as they do and to be constantly updated and do these meetings, to me, let's me know that they are staying on top of things. I know that the next one is in Boston this month as I'm having the opportunity to meet one of the CK docs that I have communicated with extensively from outside the Boston area that are coming in for it.  I honestly don't know how others do "round tables" or such (ie: GK/Trilogy, etc radio-treating docs) but for me, to know that the CK centers do this means a lot.  Just my 2 cents.

Phyl

[Tumbleweed]

Another great post from Phyl. I didn't know about these meetings she brought up. Good info.

Best wishes,
Tumbleweed

[ppearl214]

just sharing info I pick up along the way from the docs.... glad to share with you all. My radio-onc gave me the heads up on the Sept mtg as he knows there is another CK radio-doc (that he knows from these meetings) that I've been wanting to meet. 

TGIF all!
Phyl