3 ms·

"There is no central medical database or significant communication between hospital systems." I find this somewhat astonishing and deeply troubling. How can pa

by thret 6y ago

"There is no central medical database or significant communication between hospital systems." I find this somewhat astonishing and deeply troubling. How can patients or doctors truly make informed decisions if they are not in fact well informed? This is not right at all.

sxg 6y ago
In my opinion, this is partially the flip side to prioritizing data privacy. HIPAA has been very successful in getting hospitals and healthcare organizations to take patient data privacy seriously, but HIPAA has also disincentivized these organizations from sharing data in a reasonable way even for truly altruistic purposes (e.g. research). And the idea of creating a central medical database just feels like a massive legal headache with huge consequences if anything goes wrong. The other party responsible for the lack of centralized data is the EMR vendors (Epic being one of the largest). They're incentivized to lock-in their clients (i.e. hospitals) by making any kind of data sharing at best a pain in the ass and at worst entirely impossible. For large health systems, I've heard the cost of changing EMRs is in the tens to hundreds of millions (USD). Besides the detriment to research, this does lead to real patient harms. Where I went to med school, there were two major hospitals systems about 5 mins from each other in a major city. I worked in the emergency department at one hospital where I would frequently see patients coming in after car accidents and heart attacks. But often, some of these patients had received all of their care at the hospital 5 mins away. We had zero records for these patients. Meaning, we had to work them up from scratch and any important medical history would be unbeknownst to us. This obviously led to poor care and duplication of medical tests, which can be harmful (e.g. radiation from CTs). And requesting medical records from the other hospital was infeasible in emergencies. Realistically, these records were only available 9a–5p on weekdays via fax at the other hospital's leisure.

by thret 6y ago

sxg 6y ago

In my opinion, this is partially the flip side to prioritizing data privacy. HIPAA has been very successful in getting hospitals and healthcare organizations to take patient data privacy seriously, but HIPAA has also disincentivized these organizations from sharing data in a reasonable way even for truly altruistic purposes (e.g. research). And the idea of creating a central medical database just feels like a massive legal headache with huge consequences if anything goes wrong. The other party responsible for the lack of centralized data is the EMR vendors (Epic being one of the largest). They're incentivized to lock-in their clients (i.e. hospitals) by making any kind of data sharing at best a pain in the ass and at worst entirely impossible. For large health systems, I've heard the cost of changing EMRs is in the tens to hundreds of millions (USD). Besides the detriment to research, this does lead to real patient harms. Where I went to med school, there were two major hospitals systems about 5 mins from each other in a major city. I worked in the emergency department at one hospital where I would frequently see patients coming in after car accidents and heart attacks. But often, some of these patients had received all of their care at the hospital 5 mins away. We had zero records for these patients. Meaning, we had to work them up from scratch and any important medical history would be unbeknownst to us. This obviously led to poor care and duplication of medical tests, which can be harmful (e.g. radiation from CTs). And requesting medical records from the other hospital was infeasible in emergencies. Realistically, these records were only available 9a–5p on weekdays via fax at the other hospital's leisure.