I've personally struggled with this concept for a long time. When i thought about it, the options i would come up seemed to be only 3:
At the end, i came to the realization that, even though each one of these parties can have influence on the data itself, none of them are the actual owners of the data: clinical data is a human heritage and should be accessible to everyone.
And here's why none of the above options really convinced me.
I have heard some stories where a product vendor holds the doctor hostage of clinical data: the doctor might not pay for the vendor's services any longer and the vendor, instead of simply interrupting its actual services, it also decides not to allow access to the clinical data to the doctor any more. 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!". Yes, i feel strongly against this behavior.
Maybe doctors own the data they collect. After all, they have put in the investment of purchasing the hardware and finding the patients and actually collecting the data. But even this never felt quite complete, because what happens when the provider retires and doesn't really do anything with the data they collected? Should all that data get lost with him or her? Decades of hard work gone to waste? That doesn't seem quite right either.
So if the patient owns the data, then they would have to be the ones ultimately responsible for it's integrity and safety. Certainly they could allow others to take care of it for them, however it could be hard to make sure that the entire medical record remains "in one piece". What if the patient accidentally or purposely deletes parts of the medical record?
So after a lot of struggle with this, i decided to tackle the problem starting from first principles. And i came up with this list:
If the above points hold true, then it follows that there is a direct correlation between human suffering and clinical data.
Which means that Lots of Clinical Data Help Humanity Suffer Less. |
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When thinking about what we should be doing now, the mind goes in the future and asks itself: How will the future look 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.
So who owns this data, ethically speaking? That's a good question, which i'm certainly not the first one to address. For example George Washington University Hirsh Health Law and Policy Program has published a study called "Who Owns Medical Records: 50 State Comparison." considers the law and finds only New Hampshire to have a law assigning ownership medical records to the patient, while the rest of the USA either has no law or the law assigns ownership to the medical provider. In fact, the most obvious candidates would be:
Once patient's clinical data has been sufficiently de-identified to protect the individual's privacy, data 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, not be owned by any individual. 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.