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Thread: Thinking about a specialist database

  1. #1
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    Default Thinking about a specialist database

    Hey all
    Just 'thinking out loud' and thought you might like to hear

    There are so many of us from various parts of the globe here and I think we can pool our resources into a central database. Most of us have regular specialists and GPs that we see on a regular basis. I thought it would be good to share their names, locations etc in one place. There are a bunch of threads with names, recommendations etc but the information is so spread out.

    Just looking for thoughts at the moment. Do you think this would be a good idea? What information do you think could be included? It might help new people looking for a reliable doc. I know there's the list on the Vasculitis Foundation site (somewhere on there at least - I can't find the silly thing) but I KNOW that's not a conclusive list and there are other countries too lol

    So hit me up with your thoughts...
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

  2. #2
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    That is an excellent idea Chief.

    So many people ask about what specialists they should try to see.

    Even though we all say where a good place to go is - I wonder what the legal ramifications would be (liability wise) if you were actually seen to recommend someone that turned out to do more damage than good. I'm not saying that would happen but working in Insurance myself, it is someone that I consider.

    You would still need to put a disclaimer on the page stating that we are not of the medical profession and therefore any recommendations are made and taken at your own risk and no correspondence will be entered in to (if you get the gist).

    It would still be very helpful and an excellent thought on your part.

    You would kind a need a graph with each Country and area/state and who/what is available
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

  3. #3
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    Good Idea Andrew!

    I know from reading thru many of the posts that Weggies from all over the world have one thing in common, and thats not getting diagnosed early enough or then getting to be seen by the proper docs etc.

    If we posted names of consultants/hospitals etc that have been good for us, then hopefully other Weggies could apply for a referral to a "centre of excellence".

    Obviouisly it would need to be by Country/Zone/State/District as we dont want to be tramping round the globe for treatment!!

    I'm sure your analytical brain will come up with an appropiate format/style that will work!

  4. #4
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    What a wonderful idea, Andrew! It seems to be difficult to find doctors that have experience with weg's. I love the idea of being able to share the names of our doctors we see and would recommend. I'm working on plans to move for better doctors, so hopefully I can add my new docs to this list.

    Oh yeah, and here is the link to the list on the VF website: VF Medical Consultants. But like you say there are many others with enough knowledge about weg's that are able to treat us. So I love the idea of compiling a list of WG doctors.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    Great idea! I think there must be some criteria for docs to be included in the database. A couple of thoughts are that the forum member must be very satisfied with quality of care, taking new patients, responsiveness to questions, etc.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

  6. #6
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    Good one Mr. Kahuna.

    Name of doc
    Specialty
    Experience
    How many Wegs patients
    History
    Location

    Many things can be listed for sure.
    Phil Berggren, dx 2003

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    Excellent idea Big Guy! And, if it gathers momentum, you can add other items to the list as it grows...how about putting a 'list', perhaps in Word, on here for people to add their info. Or, if someone volunteers, peeps could just send their info to one person and she/he could maintain the list on here...
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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    Great idea, and thanks, Rebekah, for posting the link to the VF list of consultants. I also have found it hard to find. For future reference, you need to use the Support button at top of page and then choose Medical Consultants from the drop down list. There is also a page of New Specialists on the same drop down list. I found that if you choose Find a Doctor, you may be referred to docs who are not known specialists.... in my case, it took me to the College of Rheumatology website and provided me with the name of a rheumy in my town but not one who I think is known for handling Wegs cases, or at least I have no reason to think so. So be careful to find the actual list of approved vasculitis specialists.

    On the other hand, I have heard of several very knowledgeable people on here, such as Al Swanson and Phil B., who use docs or clinics who are not on that list, and consider themselves to be in very good hands. That is why we need such a database, for people who cannot get to the VF recognized clinics and would like some good recommendations closer to home. It may not be a perfect system, as lesser qualified docs may be listed. Pete's idea of establishing some criteria is good. In any case, it would be an additional resource for us and would thus be valuable.
    Anne, dx'ed April 2011

  9. #9
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    I think the best way would be to create a map like we have for us Weggies which listed doctors or clinics who are endorsed by us forum members. Sort of like the Angies list for other services or the ones with reviews for eating places or motels when traveling.
    Knowledge is power! Wisdom is using it to make good decisions!

  10. #10
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    That is a very good idea drz. Well done.
    Phil Berggren, dx 2003

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