ME/CFS and the Health Information Exchange (HIE)

[sickntired771]

In the U.S. many states have what is called the Health Information Exchange whereby doctors share records with one another across multiple platforms. Patients either consent to opt-in or must opt-out.

Is it wise to ever opt in for this? My feeling is that many medical professionals don't understand or believe in our illness and can label us as depressed, psychosomatic, or worst yet a hypochondriac.

The HIE would enable a new doctor to automatically see these previous records and just agree with previous doctors without trying to help us get better.

I am curious if people have any experience or opinions on this matter.

 

[alkt]

i agree with sickntired to many doctors give too much credence to what another doctor has written with no knowledge of the other doctors level of competence. too many people get labelled with whatever flavour of the month medical trend.that is going the rounds.

 

[meandthecat]

Yes, in a large practice where you seldom see the same doc, it feels like they scan your record and that is what they see when you walk into the office. Appointments aren't long enough for them to assess you any differently and so the prejudice is reinforced with an extra layer of their own. It's a brave and committed GP that will fight to change that.

I have often thought about asking to see my file but I'm not sure that I would be able to assess the doctor speak accurately enough to see what's really there.

 

[sickntired771]

I am never signing this release again, I think in my case it can only be used against me. I am knowledgeable and up to date and I am my own #1 doctor so I don't need my doctors collaborating. If I need them to, Ill assign permission but I don't need to give them access to doctors who don't believe CFS is real.

I wonder if there is a site where "dr speak" and medical lingo is deciphered for the lay people.