When thinking about what we should be doing now, the mind goes in the future, and asks itself how will it be? How will the future look like? It seems like we like to imagine a future where the problems and errors involved with creating, moving and copying clinical data will be gone. Where medical providers will not have to waste hours re-creating charts which were already created by a different provider, or by re-taking exams just because they don't have access to previously taken exams. Where as a patient walks into the ER, the provider will have instantly access to the patient's entire medical history (unless the patient decides not to allow this). But today, most providers are holding on to the clinical data they collect. So how on earth could another institution instantly have access to it? There would have to be agreements, and networks would form, dividing some institutions from others, kind of like the way it is now: if you are part of network A, you can get access to data from that network only.
No, this can't work. Ethically speaking, the clinical data needs to be globally available, s.t. any provider can help any patient anywhere in the world. And such that any research project can have easy access to all of the clinical data of the entire planet.
Holding data hostage
I have heard some stories where the vendor holds the doctor hostage: the doctor might not pay for the vendor's services any longer, and instead of simply interrupting the vendor's actual services, the vendor also decides not to allow access to the clinical data to the doctor. My initial reaction to that, has always been "hey, that's not ethical: the vendor's don't own that data, it's the practice's (or doctor's) data!"
But also that never felt quite complete. Just like the fact that most orthodontic practices save their data on their local servers. Yes, that's useful in terms of privacy and making sure that data stays in house, however there's something missing.
So who owns this data, ethically speaking? That's a good question. The most obvious candidates would be
Once patient's clinical data has been sufficiently de-identified to protect the individual's privacy, it should be publicly and easily available to the entire human race. This will allow it to be maximally useful for research and patient care. Therefore I believe that patient's clinical data is a human heritage! As soon as some clinical data has been collected, the patient should have the option of allowing it to be stored on some kind of network that will make a de-identified version of it available to qualified researchers and a full version available to any medical provider with an appropriate key.