Thinking about a specialist database

[andrew]

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...

[mishb]

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

[Geoff]

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!

[rebekah]

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 (http://www.vasculitisfoundation.org/mcm_resources/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.

[Pete]

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.

[pberggren1]

Good one Mr. Kahuna.

Name of doc
Specialty
Experience
How many Wegs patients
History
Location

Many things can be listed for sure.

[Dirty Don]

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...

[annekat]

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.

[drz]

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.

[pberggren1]

That is a very good idea drz. Well done.

[Debbie C]

Along with everyone else ,I think that is an excellant idea.It would also be so useful for people who travel to be able to locate a good dr. while not at home if something should come up.:thumbsup:

[Palmyra]

Andrew, I think this is a very good idea and one that is a long time in coming. Most of us do not live near a major Vasculitis Center, and have to plan trips to these sites carefully. A list of local doctors that are open minded as to seeing this patient pool, and that are as scattered as we are around the globe is an excellent recommendation. I second the notion:biggrin1:. We do have a "pin" type map that locates most of us...we might do the same with our local specialists.

[andrew]

Thank you all for your responses!! I think the disclaimer is an excellent suggestion and we should definitely set criteria but steer clear of a ratings scale or recommendations. Tricky but we can do it. Loving the idea of a map as well. I was thinking about all your responses over the last couple of days and thought that I can set up a site framed around a business directory - it would have all the criteria we need plus each listing would have a map showing the location. It would be searchable from the front page by (mainly) location. There would be the ability for people to add their own but I think a single admin person would be best - either to enter the details themselves or approve/amend details entered by others. There is some ready-made software that does the trick with a minimal amount of tailoring. Thinking that a certain level of forum membership would be required for anyone to add docs???? This would at least ensure that the doc has a) been 'tested' and b) there's an official diagnosis??? Again - thinking out loud.

Thoughts?

[Alysia]

Thinking that a certain level of forum membership would be required for anyone to add docs???? This would at least ensure that the doc has a) been 'tested' and b) there's an official diagnosis??? Again - thinking out loud.

Thoughts?

Hi Andrew,
I agree. to be honest, I was thinking to myself that I'm not sure at all if I have enough knowledge to reccomand a doc. I can reccomand mine but he is not standing in the criteria here...
although there isnt any one better, as long as I know, in my country.... maybe there should be "second rate list", with "local criteria" when there isn't any other choice...? I don't know.
anyway, I dont see anyone from Israel coming here to look for a doc, ... (maybe I should be glad about that)... and Im not lonely anymore as I was before I came here, because all of you, my amazing generous friends :hug2:
great doing, andrew :thumbup:

[annekat]

What Alysia said is true, that some of us know more than others about Wegs and what makes a good Wegs doc. However, some of us who don't know so much might still have a doc whom we trust, whom we feel has significant WG experience and/or is perhaps consulting with recognized Wegs specialists. So perhaps anyone's viewpoint of their doc should carry some weight, although some criteria would be nice, too.... I agree some level of forum membership would be good, and some length of time having Wegs and having learned the ins and outs of various treatments, awareness of the different things people go through, etc. Just thinking out loud, too.

[andrew]

Ok time to nail down criteria :) My thinking is that we stick with criteria that is not open to interpretation or is a matter of opinion. That is:

Name of doc
Specialty
How many Wegs patients (if known)
Location/address
Contact number


Criteria I want to steer clear of:
Bedside manner
Attentive
Pleasant etc etc

Again, happy to take suggestions and comments/criticism.

I'd like to get the site up by, say end of September so we will work through requirements and suggestions for the next couple weeks.

[annekat]

I guess I was thinking some of the criteria might be for the person doing the recommending, but I guess criteria for the docs is the most important. I'd hate to limit someone's recommending a doc just because they are new to Wegs and the forum. I agree that going on and on about bedside manner and the like might be discouraged, but I don't seen a lot wrong with someone saying they like their doc, feel comfortable with them, and feel they are listened to and given adequate time, etc. But I also see the need to focus the criteria on the docs' professional qualifications and experience with Wegs, or willingness to consult with specialists, and would go along with whatever is decided. It would seem best, if naming names, to limit it to saying good things about docs and not engage in "doc bashing".

[pwc51]

I agree with Andrew - I think it needs bland data. It can get emotive and potentially open us to libel cases if we start to qualify them in any way. As with WG we are all different and react to others in different ways, so someone that appeals to one of us maybe an anathema to another! What I would expect is that names are not added to the list unless the person making the submission feels comfortable that a resonable job is being done?

[me2]

Great subject. I'm looking forward to the completed or at least beginning directory. I understand the issue of personality is a very tricky one and I don't have an answer but would like to share some thoughts.
I think for me , in the beginning of having this illness personality was much less important than finding someone with lots of experience and qualifications. But as I have become more educated and able to understand the illness and possible treatments I need someone that I get along with more and is open to letting me make decisions . As weggies , the problem is , our needs are all over the map and change from day to day some times.
I guess I'm trying to say that I see some need to be able to talk about how the doc is to work with. I agree the idea that bashing is not really helpful. Could it be as simple as setting the criteria that people could voice positive things about their doc. Nobody is going to get sued for that. If a doc is mentioned and you don't see a lot about how great they are to work with you could draw your own conclusion.

For example , I have talked about seeing Dr Langford in Cleveland and what a great doctor and person she is. Very competent of course but also someone very kind and considerate.

I'm looking forward to seeing how the criteria develops on this.

Oh, and it seems the necessity to voice our discontent is served elsewhere on the site where we are all free to rant and vent about a particular experience. I think almost everyone here has at least one story like that to tell and that is important too. Usually I have seen that here where people are not using names. So the discontent is not attached to a name but might allow for private contact outside of the directory.

[Dirty Don]

I'm not much for any doc or hospital ratings unless one wants to PM privately and get info...just having them on here would be enough help at first. My rheumy was badmouthed by some patients who, for some reason, didn't get along with her...yet, with me she was sweet, kind, understanding, and very honest and forthright...so, difference of service, opinion, and perspective all serve to 'create' a doc personality that perhaps isn't fair to them either. Just a thought.

[annekat]

I think I will trust that whatever criteria Andrew comes up with are probably the best, to start with. I suppose things could be changed later if Andrew saw a need or benefit to doing so.