Virtual second opinion for NTM?

@melb0606 I looked into this and the quick-ish answer is kinda.

Scenario One - you obtain the consult directly as patient: As was explained to me by Mayo, to do virtual appointments the medical facility needs to have a doctor licensed in the state you live in. As I understand it, for medical licensing purposes “treatment” is where the patient is located (not the doctor). I live in California, so Mayo could not do a virtual consult as they have no doctors here. I would have to go to them for an in-person appointment. I imagine even if a doctor does practice in your state it is discretionary whether they will do a virtual appt so you would need to inquire directly with the in-state doctor. I often do virtual appointments with my local doctors but that was after an initial in person visit. I don’t know if they would have been willing to do a virtual appointment without ever seeing me in person first. Like most things, it likely depends.

Scenario Two - you obtain consult through your doctor: National Jewish Health (NJH) offers consults directly with out-of-state doctors, if your local doctor is willing to go this route (I am told doctors’ egos can be resistant to the idea). My local ID doctor did a consult with NJH (after I told them I was going in person to NJH) and the process has been unsatisfying, for me. I asked what was submitted to NJH and given a vague answer, I asked to see the submission and was told I could not, I asked to see the response from NJH and nope, could not see that either. Then, it turns out the information submitted by my local doctor was erroneous and now they are doing a second consult. No idea what the status of that is. For me, this doctor to doctor consult has not been a good fit as I can’t have confidence in a process where I have little to no idea what information is being shared, what questions are being asked. This of course has been highlighted by the fact the consult had to be redone. If your local doctor is more transparent than mine, perhaps that would not be an issue for you. Obviously some patients put their trust in their doctors and leave it at that, they don’t want to be involved in the details, and for that type of patient I suspect a consult process like my own may be satisfactory. In any event, I was already scheduled for an upcoming in person appointment at NJH, and I am hopeful that process will prove more successful.

As for the best NTM centers, a list recently came out that has I believe has 27 certified centers of excellence for treating BE and NTM, and 6 “associated” centers (Linda just posted a couple days ago, search prior posts). Of this list, I have been told by others that some are stronger than others but I don’t have the first hand knowledge to speak to that. From my experience on this group list (and others) certain facilities stand out more than others, with NJH and Mayo seeming to top the list. Of course, insurance, ability to travel, etc. play a role in care options so it’s worth reviewing the list to see what logistically makes the most sense and then perhaps coming back to this group and asking about specific experiences with that facility, doctors, etc.

I once read, that Mayo also does international virtual consults.
Also Cleveland clinic and some others.
(searching for 2nd opinion, telemedicine,ehealth or such)
And many places in Asia offer it.
In Germany e.g. Uni Freiburg offers international
radiologic opinions but they refused me ,
because I''m German 😉
I finally found a suitable 2nd radiologic opinion for ILD
on search-page 3 of bing

@melb0606 I looked into this and the quick-ish answer is kinda.

Scenario One - you obtain the consult directly as patient: As was explained to me by Mayo, to do virtual appointments the medical facility needs to have a doctor licensed in the state you live in. As I understand it, for medical licensing purposes “treatment” is where the patient is located (not the doctor). I live in California, so Mayo could not do a virtual consult as they have no doctors here. I would have to go to them for an in-person appointment. I imagine even if a doctor does practice in your state it is discretionary whether they will do a virtual appt so you would need to inquire directly with the in-state doctor. I often do virtual appointments with my local doctors but that was after an initial in person visit. I don’t know if they would have been willing to do a virtual appointment without ever seeing me in person first. Like most things, it likely depends.

Scenario Two - you obtain consult through your doctor: National Jewish Health (NJH) offers consults directly with out-of-state doctors, if your local doctor is willing to go this route (I am told doctors’ egos can be resistant to the idea). My local ID doctor did a consult with NJH (after I told them I was going in person to NJH) and the process has been unsatisfying, for me. I asked what was submitted to NJH and given a vague answer, I asked to see the submission and was told I could not, I asked to see the response from NJH and nope, could not see that either. Then, it turns out the information submitted by my local doctor was erroneous and now they are doing a second consult. No idea what the status of that is. For me, this doctor to doctor consult has not been a good fit as I can’t have confidence in a process where I have little to no idea what information is being shared, what questions are being asked. This of course has been highlighted by the fact the consult had to be redone. If your local doctor is more transparent than mine, perhaps that would not be an issue for you. Obviously some patients put their trust in their doctors and leave it at that, they don’t want to be involved in the details, and for that type of patient I suspect a consult process like my own may be satisfactory. In any event, I was already scheduled for an upcoming in person appointment at NJH, and I am hopeful that process will prove more successful.

As for the best NTM centers, a list recently came out that has I believe has 27 certified centers of excellence for treating BE and NTM, and 6 “associated” centers (Linda just posted a couple days ago, search prior posts). Of this list, I have been told by others that some are stronger than others but I don’t have the first hand knowledge to speak to that. From my experience on this group list (and others) certain facilities stand out more than others, with NJH and Mayo seeming to top the list. Of course, insurance, ability to travel, etc. play a role in care options so it’s worth reviewing the list to see what logistically makes the most sense and then perhaps coming back to this group and asking about specific experiences with that facility, doctors, etc.

@melb0606 I looked into this and the quick-ish answer is kinda.

Scenario One - you obtain the consult directly as patient: As was explained to me by Mayo, to do virtual appointments the medical facility needs to have a doctor licensed in the state you live in. As I understand it, for medical licensing purposes “treatment” is where the patient is located (not the doctor). I live in California, so Mayo could not do a virtual consult as they have no doctors here. I would have to go to them for an in-person appointment. I imagine even if a doctor does practice in your state it is discretionary whether they will do a virtual appt so you would need to inquire directly with the in-state doctor. I often do virtual appointments with my local doctors but that was after an initial in person visit. I don’t know if they would have been willing to do a virtual appointment without ever seeing me in person first. Like most things, it likely depends.

Scenario Two - you obtain consult through your doctor: National Jewish Health (NJH) offers consults directly with out-of-state doctors, if your local doctor is willing to go this route (I am told doctors’ egos can be resistant to the idea). My local ID doctor did a consult with NJH (after I told them I was going in person to NJH) and the process has been unsatisfying, for me. I asked what was submitted to NJH and given a vague answer, I asked to see the submission and was told I could not, I asked to see the response from NJH and nope, could not see that either. Then, it turns out the information submitted by my local doctor was erroneous and now they are doing a second consult. No idea what the status of that is. For me, this doctor to doctor consult has not been a good fit as I can’t have confidence in a process where I have little to no idea what information is being shared, what questions are being asked. This of course has been highlighted by the fact the consult had to be redone. If your local doctor is more transparent than mine, perhaps that would not be an issue for you. Obviously some patients put their trust in their doctors and leave it at that, they don’t want to be involved in the details, and for that type of patient I suspect a consult process like my own may be satisfactory. In any event, I was already scheduled for an upcoming in person appointment at NJH, and I am hopeful that process will prove more successful.

As for the best NTM centers, a list recently came out that has I believe has 27 certified centers of excellence for treating BE and NTM, and 6 “associated” centers (Linda just posted a couple days ago, search prior posts). Of this list, I have been told by others that some are stronger than others but I don’t have the first hand knowledge to speak to that. From my experience on this group list (and others) certain facilities stand out more than others, with NJH and Mayo seeming to top the list. Of course, insurance, ability to travel, etc. play a role in care options so it’s worth reviewing the list to see what logistically makes the most sense and then perhaps coming back to this group and asking about specific experiences with that facility, doctors, etc.