Alexandra Sifferlin

the collaborative work can be especially important is when you are at that level of a particularly complex diagnosis, or you are seeing a patient who has been to multiple physicians, has been to multiple specialists, and nobody can seem to figure it out.

That's one of the things that makes the Undiagnosed Diseases Network

that makes that particular system such an interesting model, because they bring together experts of different disciplines.

So you have a cardiologist and a neurologist and a geneticist and a pediatrician, you have them all talking to each other about this particular case.

And I think there's a lot to be gained from that kind of model.

And that is something that could be modeled

elsewhere at like every major medical institution that has multiple people of different disciplines.

I think part of it, too, is still the way that the system is set up where there's just not a lot of time.

Yeah.

And it does have to be a very conscious effort.

And maybe it is something that is reserved for the more complex cases.

Like if someone is coming in with a shingles rash, you can take a look at that.

You know what that is right away.

You don't really need to consult anybody.

But I do think where it could be more prioritized...

is like who are these patients that are kind of falling through the cracks who are we seeing again and again and they haven't gotten an answer how do we you know regularly consistently bring all these people together and how do we make sure it's not on the patient themselves to try to figure out where to go to get that kind of that kind of holistic care could it be just something that is a bit more regular yeah

I think it's incredibly frustrating and isolating and scary.

I think

when you're not getting answers, you can get a bit desperate.

I have spoken to a lot of people who sort of felt like the only answers for them were to look outside the medical system altogether.