this post was submitted on 25 Mar 2021
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I think a centralized database is the simplest and most politically feasible with current technology. In theory users could hold all the data on their own device, but this introduces additional complexity and problems. For instance, many of the notes that are included in a medical record are not meant to be seen by the patient e.g. "At presentation patient stated pain in lower back, then stated the pain was in their upper back, then stated pain was in left leg. Inconsistent report, pain medication not prescribed. Patient's Medical Record Number flagged for future providers to be aware of possible substance abuse"
If the user holds this data themselves, then they will presumably be able to read that data, and that will make providers jobs that much more uncomfortable knowing the patient will likely read the sensitive information that needs to be stated, but has a high likelihood of making patients uncomfortable and angry. If the user holds this data they will also be able to edit and delete crucial parts of their medical record and without a proper medical record providers can not administer proper care.
What is currently happening is that Electronic Health Record software companies are starting to build these centralized databases / make sharing easy between health systems using the same EHR software e.g. EPIC ShareEverywhere.
I believe a publicly accountable institution should be responsible for managing a central repository, not a private company, and I believe that at the current time a centralized collection of medical data is possible while a decentralized, but seamless, database has yet to be proven.