this post was submitted on 25 Mar 2021
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My experience comes from working as a medical assistant and nursing student in the US.
Medical records. When a patient seeks care from a new provider the practitioner often needs access to their complete history to treat conditions that may appear trivial at first glance, but might be a symptom of something more serious.
The current medical record system in the US allows for a patient to hop from care provider to care provider, selectively disclosing their medical history so that no single provider has a complete medical record. This design has been preserved from a time before a universal medical records were possible in order to address valid patient privacy concerns, but from a providers perspective it makes practicing medicine far more dangerous.
If a patient presents for a sinus infection and is prescribed a penicillin derivative without ever disclosing that they are allergic, and then the patient dies of an anaphylactic reaction, the patient's family is likely to sue for malpractice. Did the patient simply forget to mention they were allergic or did they decide their last reaction was so long ago that they were no longer allergic? It doesn't matter, the family's lawyers will scrounge for a medical record, or several, documenting the penicillin allergy. Even if the practitioner's documentation of the visit is perfect, and the patient's family loses the case, it's still a soul-crushing and expensive experience for everyone involved.
In another situation a patient with an opioid addiction may visit many providers in their region in order to receive multiple prescriptions for painkillers, this is very common.
Without a seamless medical record system these and other preventable outcomes will continue to cause misery to patients and providers. I believe a central medical record database would drastically improve the quality of healthcare in the US.
Decentralization of medical records is a single factor contributing to the fact that US doctors and nurses commit suicide at a rate about three times higher than the general population.
While I'm on the soap box: Medicare for all is the single most important change to push for. If you live in a country with socialist healthcare, please protect it.
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.