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It should be an option to ask hospitals to purge your data or have some kind of intentional and deliberate opt in/opt out conversation at some point in care. T

by jcims 6y ago

It should be an option to ask hospitals to purge your data or have some kind of intentional and deliberate opt in/opt out conversation at some point in care. This is a double-edged sword though. Case history is incredibly valuable for physicians and personally I would likely opt for them to retain it if I'm going through any kind of chronic illness. My wife went through a very severe illness that lasted over two years. We saw numerous hospitals and doctors over that span and the ability to have the hospitals exchange her data completely and accurately was instrumental in ensuring timely and accurate review of her case. Sure I could have done that with some kind of data checkout/checkin mechanism but I wasn't in the best state of mind to be able to implement all of the resiliency mechanisms required to take appropriate care of that information.

Hamuko 6y ago
>It should be an option to ask hospitals to purge your data or have some kind of intentional and deliberate opt in/opt out conversation at some point in care. What if you suspect that there's been medical malpractice done on you and you've purged your data? Or there's some sort of an investigation where the authorities need to get in contact with a certain doctor's patients or something?
- jcims 6y ago
  Perfectly valid questions that need to be part of the calculation and why I'm interested in this topic. I don't think my wife experienced anything that would reach the bar of malpractice, but mistakes and poor operational practices definitely impacted her care. Because the hospitals retain this data I was collect all of the medical records from her experience and am currently seeking a subject matter expert to review them (very difficult to find it turns out). If I had requested that this data be purged without having a complete copy then obviously the information is not going to contribute to any follow-up investigation. There are very real and concerning issues with ongoing custody of this type of data by any organization, let alone any of the access that is provided to it through relationships that we as consumers are unaware of. But I don't think the answer is wholesale elimination of custody, there's a lot of pros and cons that everyone should be in a position to understand and decide for themselves.

by jcims 6y ago

Hamuko 6y ago

>It should be an option to ask hospitals to purge your data or have some kind of intentional and deliberate opt in/opt out conversation at some point in care. What if you suspect that there's been medical malpractice done on you and you've purged your data? Or there's some sort of an investigation where the authorities need to get in contact with a certain doctor's patients or something?

jcims 6y ago
Perfectly valid questions that need to be part of the calculation and why I'm interested in this topic. I don't think my wife experienced anything that would reach the bar of malpractice, but mistakes and poor operational practices definitely impacted her care. Because the hospitals retain this data I was collect all of the medical records from her experience and am currently seeking a subject matter expert to review them (very difficult to find it turns out). If I had requested that this data be purged without having a complete copy then obviously the information is not going to contribute to any follow-up investigation. There are very real and concerning issues with ongoing custody of this type of data by any organization, let alone any of the access that is provided to it through relationships that we as consumers are unaware of. But I don't think the answer is wholesale elimination of custody, there's a lot of pros and cons that everyone should be in a position to understand and decide for themselves.